Self Prescribing Medicines for Underactive Thyroid

in thealliance •  last year  (edited)

I was diagnosed with an under active thyroid a number of years ago. I was put on the standard medication in the UK (levothyroxine) and was increased gradually over the period of a year.

After being on a high dose of Levothyroxine for a while, I began to experience dizzy spells and feel really ill, so I went back to my GP and after doing a lot of research, I asked if I could be swapped onto Natural Desiccated Thyroid instead of Levothyroxine.

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I was told that NDT was not available on prescription and if I wanted to be on NDT, I would have to self-prescribe, which was not advisable. So I went back to my research and found that the NHS can prescribe T3 only treatment, which should resolve the issues that I was facing.

My body was not converting Levothyroxine (T4) into the useable form of T3, so a T3 only medication would help to resolve this and I shouldn’t need so much medication to feel well again.

Back to the GP! This time I was told, yes, it is available under special circumstances, but my GP could not prescribe it; it had to come from a specialist consultant.

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I decided to try it myself first. I bought the T3 on the internet and under the guidance of my GP and regular blood tests, I found a level that worked and I felt great. My bloods had never been better!

At this point, I didn’t want to risk buying the T3 over the internet (you never know what you will get) so I asked my GP to refer me to a consultant so I could get the medication that I needed and THAT WORKED on the NHS.

Fast forward a few months, I arrive at the consultant Endo’s office. He looks at my bloods and says he thinks I have been misdiagnosed and that I shouldn’t be taking T3 at all.

This was frightening so I agreed to stop taking all medication to show him my ground zero blood results so that he can monitor me from the beginning.

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This is where it all went completely wrong!

The consultant monitored my bloods over a few months (with me taking zero medication) and decides that he is not going to help me by putting me on ANY medication. He refuses to accept that I have an under active thyroid as my levels are low, but in his range.

The range however is set too high. Any thyroid expert will tell you that the UK ranges are not accurate enough and my bloods were clearly showing that I was underactive.

I am now 2 years down the line and I have no help from either my GP or my Endo and I feel like crap!

The main Underactive Thyroid symptoms are:

  • Exhaustion
  • Weight Gain
  • Dry Skin
  • Sensitivity to Cold Temperatures
  • Constipation
  • Depression
  • Brain Fog (the worst symptom imo)
    and many more.

My bloods are now taken every 6 months and show that I am in range but in reality they are showing my thyroid is struggling.

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I am left with no option but to go back to self-prescribing, but now I have the added complication that I have no doctor supporting me with this so I cannot keep track of my bloods, unless I also pay for private blood tests (which I will have to do, as it is unsafe to take the meds without knowing how much to take).

I think the UK has a long way to go with healthcare. Our emergency services are pushed to the brink of collapse and our Doctors are on strict budget decision making guidelines. Nowhere in any of that is individual patient care a priority. It is all about the money.

I have seriously considered private healthcare, but I already pay my taxes and why should I have to pay again just so I can get the medical help that I need to keep me alive? Yes, Underactive Thyroid is a serious disease, no matter how many people make fat jokes about it.

I have another doctor’s appointment later today to tell my GP that I no longer wish to be treated by the Endo that has ruined my body for the last year.

I hope he understands and will agree to help me to get back to where I was before.

If not, I had better take out a second mortgage…

Thank you for reading, much love @beautifulbullies

I am in no way advising anyone else to self prescribe. Please do your own research and speak to you doctor before making any decisions

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My thyroid function seeems to have gone with a few other things, according to my last blood test a few yrs. ago. I experience many of the symptoms you described. I do believe it is an aging problem. I’m one of those people who doesn’t believe in taking medication as the side effects can be worse than the cure. I was prescribed synthroid (levothyroxine sodium tablets) for the thyroid.
Many friends are on these pills. I don’t take them -it has to be adjusted through blood tests.
I try to eat natural foods, take liquid vitamin D and drink a few Tblp of mineral oil or sunflower oil periodically to help.

I agree. If I can avoid taking pills I do but my thyroid really struggles without the meds. IF has actually affected my bloods positively though which is amazing!

what a nightmare! I am so sorry to hear you are not getting the treatment you feel you need. I would most certainly be going to get another opinion, although I also understand the costs of medical expenses can also hinder people from being able to seek better treatment.
Sending a whole heap of positive energy your way, my heart feels so much for your pain.

Thank you! Yes, I have managed to get a referral to another Endo so I am hoping to get better treatment going forward. :)

That is fantastic news. I am so happy to hear the tables are turning <3

oh my goodness!!!! I will definitely be talking to you in the Playground! i've had some issues with my blood too - and it took some tap-dancing! we still haven't figured it out completely but it took going to a functional MD (instead of the traditional western medicine) to really get the help i needed!

i know you're in the UK - but i totally know the frustration you're going through!!!!! i hope that you find the help you need!!!

ah I am sorry to hear you have struggled too! It is amazing just how many people are going through similar issues...quite scary actually! I have been doing IF 16:8 and my bloods have actually improved slightly and I am convinced it is to do with regularly fasting, but I can't prove it of course. Looking forward to chatting in the playground! :D

well i have a little issue with my red blood cells - and that is taxing my body and causing some t3 reverse issues? is that what it is? I think that mostly - the doctors only test t1-t4.... but apparently there is an infrequently tested reverse t3 or t3 reuptake that can indicate more that is going on in the body! anyway - not important

what IS important is that i have a fabulous functional medicine MD now who is on the case. I really hope you get a good doctor soon!!!!!!!! :)

ah yes, reverse T3 is an even more complicated issue! I feel your pain! :/ t3 only meds can also help with that issue though so you might want to do some research into it? Thank you so much for your support :)

yeah... i'm not sure if i'm saying it right... is it the reverse T3??? or the T3 reuptake? (they're two different things right?)

so that's the weird thing that she was saying! if she had just tested my T1-4 - they appear fine.

but when you see that other thing (whichever is right - i forget) it's actually more hidden. and reveals that something else is going on underneath the surface.

but she said it's most likely related to the fact that my body is under such stress with my RBC - its being taxed, and so the body is trying to .... kinda slow things down so that I don't burn so much energy

which is hilarious - because if you knew me - you would know i am a BALL OF ENERGY (well - for most of the year hahaha)

it's all so interesting!!!! the body - isn't it??? a marvel! truly!

and when you find an excellent doctor that is willing to walk through it all with you and play "detective" instead of just putting you on some medicine to deal with the symptoms only!!! gah!

i want the comprehensive approach - you know? i hope you do find that yourself!!!! truly!!

but - she seems to think that if we support my body with all of the underlying things - the rest will begin to self-correct.

I have already seen just a bit of improvement. i saw more last year when i was in treatment - and i'll return to that - and also be very vigilant about treating my body as a whole picture.

I just started some goals on September 1 - and I'm doing well in keeping on track. (mostly hehehe)

every week - i just hope to get better and better

I hope the same for you!!!

It sounds like you have a positive mindset to it all too which is great! 😁😁 hopefully we can get sorted and we will feel on top of the world! 🥀🌷⚘

Good heart on you😎🤗

Yes, I hope my heart is ok, even though my thyroid is not so good lol ;)

I hope you will be there where you was. I pray and Ian you will again healthy, fit and smart. I hope all your problems will solve and you will be looking healthy

Thank you @syedshahmir :)

Sorry I don't know so much about diseases but I can pray for you

Oh man. What an awful story. Ohhhhhhh.

That just hurts my heart. I wish there were something I could say or do except 'keep fighting kid. You are THE one that knows."

Just back from my GP and he is of the same mind which is fantastic. He is writing to my Consultant to tell him I will no longer be seeing him and that I will be going back to my GP in the future. The issue still remains that the medication I need will have to be sourced on the internet, but at least my doctor is on my side and will help me to be well again.

Oh, this does not sound like fun at all... I have a colleague who had cancer in the thyroid. I was talking to her on our last tour, and she was saying that she has a huge deal of problems with the medication, either too much or too little, and that she could only do a twice yearly blood test to determine the "right" amount of medication to take...

yes, unfortunately this is the standard for thyroid bloods. Once they have you at optimal levels, they assume you will stay that way for at least 6 months, but that is not always the case. Mine fluctuates quite a bit so my bloods were being done every 8 weeks, but they changed it to 6 months after my last consult.

Strange that it can't be done more often. I would have thought that blood lab work was getting cheaper and greater. But then I would honestly not know anything about!
My colleague said that her lifestyle changes so much from season to season that it is pretty much guaranteed that every season she is going to be out of whack with the dosage.

found you because of your brother :) he shared your blog on a traders channel. nice post keep doing !

Oh really?!! Haha bless him :) Has he made his millions yet? If so, I will pop round for a cuppa ;)
Thanks for dropping by! :D

hi dear, what a hell to be dependent on the Gp and the other %⁽$%&/ because its your body you should know! have you tried alternative meds? Or accupuncture?
greetz from fellow steemitmama britt

Hi Britt! Great to see another steemitmama here! :D
Yes, I have been trying alternative methods, for example I have been doing IF 16:8 (intermittent Fasting) and it has helped a little, but not nearly enough. I also avoid thyroid damaging foods eg soy to minimise my thyroid deteriorating any faster than it has to. I have tried all the available thyroid meds and T3 is by far the best treatment (for me) but it is just not available to me from my doctor which is ridiculous. My medication has to come from either Mexico, Greece or India! Stupid eh? :/

Do we have it in the Netherlands?

I am not sure. I don't know the healthcare system there. Hopefully your government is a bit more open minded than here in the UK :(

Dear There are No more open minded people than the dutch Whats the name excactly I Will cheque it out and come back to you ( in My hockey team There are 3 doctors)

Haha this is true! xD
The medication is called T3, or Cytomel

Dear There are No more open minded people than the dutch Whats the name excactly I Will cheque it out and come back to you ( in My hockey team There are 3 doctors)

Good article!
I just thought I'd tell you how I corrected my underactive thyroid - it's been in decent shape for the past 8 years after being told 16 years ago that it would be a lifetime condition... (I also found that the levothyroxine was a chronic fatigue trigger for me - so I really had to get off that! The natural versions weren't an option when I was in the UK.) So, I will share what I did.

#1 - know your body temp! Your first-thing-in-the-morning temp is a HUGE indicator of your thyroid health. If it's under 98F, your thyroid cannot function correctly. I am happy if my first temp is around 97.7 because I know it will reach 98 fairly quickly. But before I started self-treating, it was around 97.3 - WAY too low and almost a dead giveaway that the thyroid wasn't working correctly.

#2 - stop attacking the thyroid with diet! I know you're not doing it deliberately, but there are many parts of the modern diet that negatively affect the thyroid and suppress the body temp. Did you know that chlorine, fluoride and bromine all compete with iodine in your thyroid? These things suppress its function. Soy suppresses the thyroid and body temp too. Personally, I also find that corn sweeteners (glucose syrup, dextrose, maltodextrin, etc) can suppress my temp for a day or two.

#3 - support the thyroid. I do this with iodine supplementation at a therapeutic dose (I think I found that to be around 9-10 x the normal supplemental dose, but you'd have to double check as it's been a long time since I looked it up. Sea kelp is another good source of natural iodine - you can get these little granules that you use like salt. When supplementing, you have to be aware of the symptoms of hyperthyroid, but it sounds like you've got that one covered!

I really need to write an article about this!

Anyway, good luck!

Thank you! Yes, I think you may have messaged me before about iodine treatment (or it may have been another very helpful lady :). I have been looking into it but as it is so extreme, I don't want to do it until I have read more about it.
I know T3 works for me, but it is so frustrating that I can't get it on the NHS. And now the Endo has said I am "in Range" and has decided to not treat me at all, I am losing all hope tbh! I am seeing my GP in an hour so I am going to go armed with a list of symptoms and complaints and tell him I no longer want to be under the Endo. I just hope he supports my decision and agrees to go back to how we were before where he was monitoring my bloods for me. :/
The body temperature is a great idea! I will start doing that straight away.
So pleased you have managed to correct your condition, I will keep an eye out for your post! :D
Thank you for commenting xx

FOR TSE:

Brain Fog (the worst symptom imo)

Oh, mine, too!! I absolutely cannot work when that sets in -- and my being able to work is absolutely essential. In fact that's how I know I need to get some pills down ... when the writing grinds to a total crawl.

Objectively, you may be smarter than I am in your approach to self-medication -- but I'm not above self-prescribing. I've found some over-the-internet dessicated thyroid tablets that work well for me. I mess with the dosage until I feel right.

You may have heard. Our health care system here in the US makes yours in the UK look like The Platinum Plan. And I don't trust pharmaceuticals anyway. I hope you find something / some combination of something that works well for you. Srsly.

BTW, did you know L-Tyrosine supports thyroid function? I take that, too. Just for that reason. If I had to show some doctor what I'm like w/o any of my "self-prescribed" meds, they'd have to carry me in on a stretcher.

Wow, there are really so many people in the same boat! It makes me question doctors even more :/ Do they really understand thyroid disease properly? Perhaps more research needs to be done. I don't think it is taken seriously enough.
Glad you have found something that works for you. NDT had too much T4 in it for me and I was pooling, which was causing the dizzy spells. T3 is defo the answer for me, I just need to figure out how much to take. It is hard because you have to dose a few times a day and it is fast acting, so you never really know the true blood results anyway.
I didn't know about L-Tyrosine, I will look into that, thank you! :D
Oh, and my stretcher is on order from amazon ;)

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