I am hoping someone can shed some light or help me as I am getting quite desperate with this issue. Here we go:
I was diagnosed with autoimmune hypothyroidism just over 20 years ago. I was placed on Levothroxine 150micrograms/day and was fine for ten years. However, about ten years ago something happened (we dont know what still) and my dose had to be increased to 225 micrograms/day. Again I was fine for ten years.
Back in late 2014 my annual thyroid monitoring test showed elevated T4 and suppressed TSH (both out of range), so doctor reduced levothroxine dose to 175 micrograms/day to compensate. I became very hypothyroid within a few weeks, and started to develop hypothermia! At this point doctor increased dose back up to 200, but stated it was a little too high a dose for my borderline blood tests.
I never felt great since that point, but over last 9 months I have got gradually worse hypothyroid symptoms (I can tick them all off the classic symptoms list) and even have developed myxoedema which has become quite debilitating. My blood tests still show that i am borderline over-medicated (and rising) but the symptoms point to hypothyroid and are getting worse by the week.
Both myself and doc are at a loss, and I am awaiting a consultation with endocrinologist when ever that may be. Doctor has ruled out all he can by various blood tests: liver, kidneys, cortisol, Vit B12 active, calcium, iron, and full blood counts.
My latest thyroid test (including Rt3) are below, has anyone anywhere had similar experiences? Last test was May 16 this year and below:
TSH: 0.046 mIU/L - Range (0.270 - 4.20)
Free Thyroxine: 22.46 pmol/L - Range (12.000 - 22.000)
Free T3: 5.28 pmol/L - Range (3.100 - 6.800)
Reverse T3: 26 - Range (10.0 - 24.0)
Written by
DavyB
To view profiles and participate in discussions please or .
One thing everyone learns on this forum what is "normal" as understood by GPs is generally not normal by us. So post your results for the tests you have had with the ranges.
Yes it is a lot of typing but lots of people find out they actually don't have a high enough B12, vitamin D or ferritin level.
You are allowed to ask your doctor's practice for a print out if your test results if you are in the UK. It comes under the Data Protection Act.
You may have to pay a few pence for it and but you are legally entitled to it. If the receptionist asks you why you want it simply say for your own records.
The only thing that is difficult is guessing the months when you had the tests. Though some receptionists are more helpful than others and will give you recent ones or all of them.
I'm actually worried your B12 and Vitamin D aren't high enough especially as you have been unwell for years.
doctor has put me on 50,000IU per day of D2 Wants to retest in a month. Going to post a question on D2 vs D3 on the forum as have been told (and believe) D3 far better option
Sandy, his FT3 is not in the 'top part of the range', it's only just over mid-range, and that is quite low enough for him to have symptoms.
DavyB, you are not converting very well. This could be due to nutritional deficiencies, or it could be not enough calories, or a lot of other things, but getting your nutrients tested is the first step. We need optimal vit D3, vit B12, folate, ferritin, zinc, magnesium... to convert well.
Well, I'm not sure I totally agree with you. Obviously hormone resistance does exist, but not with an FT3 just over mid-range. It's always stated that most people on thyroid hormone replacement need their FT3 to be at the top of the range to feel well.
DaveyB is only taking 175 mcg Levo. Hardly a huge dose if you take into account the amounts prescribed in pre-blood test days. Plus, he has a conversion problem. His TSH is not suppressed, so I think he needs an increase in dose - or, even better, a little T3 added to his T4. I really think his FT3 needs to be higher for him to feel well.
And, when it comes down to it, my solution is the same as yours, doesn't matter what name you put on it. His doctor isn't going to understand, anyway.
Many thanks for the input, and would like to clarify things further tho:
My TSH is very suppressed: TSH: 0.046 mIU/L - Range (0.270 - 4.20)
Also my T4 is high: Free Thyroxine: 22.46 pmol/L - Range (12.000 - 22.000)
T3 Okish: Free T3: 5.28 pmol/L - Range (3.100 - 6.800)
RT3 also High:Reverse T3: 26 - Range (10.0 - 24.0)
My doctor claims my T3 ratio is fine but would like to reduce my levo dose from 200 to 175 mcg due to high T4 and low TSH. He has held me on 200 as when 175 was attempted I developed Hypothermia So we are waiting an endocrinologist appointment to see why I am hypothyroid whilst having hyperthyroid blood results.
My theory and gut feeling is some kind of thyroid intolerance as i was happily on 225mcg for ten years until the T4 in my blood started to rise along with hypo symptoms over a year ago.
You do not have 'hyperthyroid' blood results! Your FT3 is only just over mid-range. It has to be over range for you to be over-medicated.
You just aren't converting very well, are you. You need high FT4 to get a mid-range FT3. Although, come to that, you FT4 isn't high enough to warrant a reduction in dose.
It doesn't matter if your TSH is almost suppressed (not quite!). You don't need it anymore. And it's not going to do you any harm - no matter what your doctor thinks, it just isn't. And he'd be better off trying to find out why you don't convert very well, rather than trying to reduce your dose.
I think your main problem is having a doctor that knows nothing about thyroid!
Thank you Oddly my Doc has hypothyroid himself, but anything out of normal thyroid conditions he has no experience of it seems, hence the referral to endocrinologist. I think his issue is that my T4 is over the top of normal range so he wont up my levo does (although he has decreased it and made matters worse). I assume its extra T3 i need if i am failing to convert? Thanks again for the input tho
Extra T3 added to a reduced dose of Levo would probably do you the world of good. I do not understand why he can't see that for himself. However, the FT4 is only really at the top of the range, not that much over, so I don't know why he's so keen to reduce your dose. Are you sure he's not just looking at the TSH? They do panic so if it gets below range.
He is looking at both: T4 and TSH and states that with them both at either end of range he cannot up my dose despite agreeing I have all the classic signs of Hypo
Then he's an idiot. The TSH is meaningless at this stage of the game. But with your FT4 at the top of the range, and you still having hypo symptoms, he should be asking himself if you are actually converting that T4 yout taking, not quibbling about whether or not he can incease/decrease your dose.
Hi Greygoose, again many thanks for the info all very interesting and helpful
As I may have a long wait to see endo specialist, I did start taking extra Levo a few weeks back (after all my blood tests). I feel slightly better to be honest, but thinking T3 would be better as you say. I am sure I could find this to purchase somewhere in the UK (or EU that ships to UK) so may well give that a try? What you think??
Although I am sure my doc will sort out the Vit D (which I read has big impact on T3 uptake in cells) I am still considering adding some T3 myself, if only to give temp relief whilst Vit D is building back up. I can always drop the extra T3 once Vit D is up, or I feel a lot better I guess. What you think? Good plan?
It's not the uptake of the T3 that is the problem. As I keep saying, your problem is that you don't have enough T3 because you have a conversion problem. Don't mean to be rude, but do you know what that means? A conversion problem is not the same as a resistance problem.
However, you do need to sort the vit D out. You need it for so many reasons. But, be careful. Doctors rarely give large enough doses, nor the right kind of Vit D. Let us know what he prescribes, and someone will tell you if it is right.
Whether or not increasing your vit d level will increase your conversion, remains to be seen. Taking some T3 is a good idea, but don't go into it with the idea that you're are going to be able to stop taking it any time soon. We do not know why you aren't converting, and we may never know.
I don't know Ergeral, l will look it up. How many did he say to take a day? Because 5000 iu is not a very high dose.
Word of warning, don't start the vit D and the T3 at the same time. Because should one of them disagree with you - and such things can happen - you won't know which it was. Leave at least 2 weeks between the two.
One vit D tab a day and they are 50,000iu not 5,000iu He did say that as they are such high dose the chemist may not have them, so get whatever but take 50,000iu per day in total. Thanks for the advice too on staggered starts of the meds, never thought of that
Sorry, I meant to write 50,000, but I was on my tablet, and I don't find it easy. lol 50,000 isn't that high a dose. And, having looked it up, I find it's vit D2. What you want is vit D3. So, as I said he would, he's prescribed the wrong one.
I would suggest you post a new question, asking people more knowledgeable than I on vit D, what you should be taking, and how much.
Greygoose is right go back to the doctor and ask for D3. You are not a rat.
The first lot of experiments in vitamin D were done in rats and as they can convert D2 to D3 it was presumed humans can do the same. This was later found to be wrong.
The doctor can prescribe you 20,000IU tablets of D3. They are not an NHS approved medicine but if your level is as low as that he can prescribe them. They are made by a German manufacturer.
Thank you, I have purchased some D3 myself and started popping them like crazy yesterday, as still waiting for chemist to get my prescription Will talk to Doc about the 20K ones you suggested. Many thanks
My theory and gut feeling is some kind of thyroid intolerance as i was happily on 225mcg for ten years until the T4 in my blood started to rise along with hypo symptoms over a year ago.
Currently waiting an endocrinologist appointment to see why I am hypothyroid whilst having hyperthyroid blood results, and will let you know. I believe the chap I am seeing is switched on when it comes to resistance so fingers crossed It is Dr Onyebuchi Okosieme I believe
Wonder if anyone can help me.. I had partial thyroidectomy 4 weeks ago for suspicious nodules which turned out to be benign. Also diagnosed with autoimmune lymphocytic thyroiditis. Since surgery have become increasingly tired. Zombie like. Have to rest after smallest exertion. Last weeks bloods show TSH of 0.8 . T3orT4 weren't measured. Ithouht I'd be back working full time by now. But am so tired I can't even contemplate it. How soon should I perk up again. Thanks
Just thought I would update you all on my progress.
As you can see from previous posts, i was diagnosed with severe vitamin D deficiency (only due to the help from this forum) whilst trying to get to bottom of my hypothyroid symptoms with borderline hyperthyroid blood results. I was prescribed huge dose of Vit D for a month, and a maintenance dose for life afterwards. To be honest, I started to feel better after a few days, but still not 100%. My endocrinologist appointment arrived, and straight away he put my T4 dose back up to 225mcg (just by looking at me: no blood test) which is what i was on for years, until the doctor reduced it due to the recent blood tests!!! Well the result is that i feel fabulous once again, although I did have a scan to check if there was a problem with pituitary gland as a safe guard. Not heard anything back, so can assume it was fine.
In summary, it does seem my Vit D deficiency led to the T4/T3 pooling in my blood, as the cells could not absorb it due to the lack of Vit D, which led the doctor to think I was fine, despite all the hypo symptoms I had as T4/T3 was ample in my blood.
Hope this at least helps someone else, and can't thank you all enough for the help you gave me
This sounds very like me. I have low d2 and been out on supplement. But can't get endo to even consider that it's a conversion problem. She out and out stated I would not be a candidate for T3.
I'm seeing gp about a transfer. They can't even do basic business case. To avoid answering my question she wittered on about trying to get permission to prescribe t3. Then stated they don't test as it's irrelevant. Does she not realise that you have to prove that you have patients with t3 deficiency to prescribe?
Still failing to spot it's a covenverson issue and there are more causes of these than being coeliac.
If it doesn't involve increase or decrease of thyroxine she has no answer.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hypo To Hyper?
Newby wanting advice about low cortisol and hypothyroid symptoms. 
Suggestions regarding the elimination of hypothyroid symptoms
I'm new here with hypothyroid symptoms & unhelpful dr
