well, in my last post I told how I had lost over 4 st in 12 months and my GP said it was down to my thyroid. But I couldn’t get an Endo appointment for 4 months. So I decided to see a private Endocrinologist.
what he told me shocked me to the core and now I am so confused I don’t know what to do.
He told me I did not and haven’t had for over 20 years hypothyroidism in fact I had hyperthyroidism because my TSH had been <0.01 for all that time which meant my thyroid was overactive. For 30 years I have been taking Levothyroxine which he now tells me has caused my thyroid to atrophy and stopped my pituitary gland from working so I will have to take Levothyroxine for life as my pituitary gland probably won’t start working if I stop.
He also said, as I already knew, I had hyperparathyroidism. But now I will probably need an op to remove the gland which is affected and possibly what is left of my thyroid
As you can imagine this has turned my world upside down. He is saying all the Endos I have seen in the past misdiagnosed me! How is that possible? I don’t know who to believe.
He also said that there was no way my thyroid would cause me to lose such a significant of weight and I need to concentrate on that rather than my thyroid
Is there anyone who can understand this?
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Can you share your current hormone/meds, how long you’ve been on that dose, and your most recent bloods (presumably what your Endo used to conclude the above)? Just so those numbers are easy to reference for those replying.
Hi, yes my T4 and T3 have been increasing since August when my meds were changed from TEVA to Mercury Pharma.
My TSH has been <0.01 for as long as I can remember
August 23 Taking 17mcg
T4. 22.7. (12 - 22 pmol /L)
T3. 3.6. (3.10 - 6. 80 pmol/L
December 23. Taking 175 Mon-Thurs and 150mcg Fri-Sun
T4. 32.7. (12 - 22 pmol /L)
T3. 4.5. (3.10 - 6. 80 pmol/L 32.7
The Endo looked back to 2014 and my TSH has never changed. Although I don’t have the numbers, when I was diagnosed, in 1993, I was definitely hypothyroid I was very ill and was seen at a Hospital and bloods confirmed it
I took Levo 24 hours before the 9am test. Yes he did say having TSH of nil means I am hyperthyroid but he did see tests going back to 2014. I have never had antibody tests as far as I know. Only parietal cell antibody test which was positive. Waiting for Intrinsic Factor results which I don’t think are related to thyroid.
I take Vit D 800 daily and have 3 monthly B12 injections although my B12 has doubled since last injection from 770 to 1476. The last Ferritin test had was in November and was normal 45.1
Folate is also a cofactor for B12 so suggest you also get or buy a private test for folate.
Recommendation on B12 injections is to also take a B complex to help keep all the B's in balance. That would include folate.
Ferritin should be around 90 - 100 for best use of thyroid hormone. Yours at 45 is too low. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Has your GP not mentioned your low TSH?
Its strange that your FT3 has risen as well as your FT4 when you are taking less Levo. FT3 is still only 38% of its range though.
If you are hypothyroid you cannot physically become hyperthyroid as endo claims....instead you may be overmedicated, have impaired conversion or experiencing a Hashi swing!
I didn’t know that! No pituitary function no check. I will add it to list. He said unlikely pituitary gland would work now as over medicated for such a long time.
You haven't got the original blood test results (so I doubt he has access to them) when you were first diagnosed your TSH must have been raised then for at least 2 tests?
From the results you have added it shows that you have been overdoing the T4 and are terrible at converting to active fT3 so what you needed was less T4 and some T3 adding at the very least to see how your levels reacted
Who increased your T4 dose when you were already over range?
He did have access to my bloods back to 2014. I was diagnosed in 1993. Results were not given then as it was before computerisation. But I was definitely hypo when diagnosed but no further tests were done for a number of years. When they were done TSH has always been <0.01
I thought it was a conversion factor myself initially. By T4 do you mean Levothyroxine?
This is what I mean you were obviously Hypo when you started on Levo (T4) but as you have been taking too much of it (possibly for a long time) it has supressed your TSH which isn't unusual but tends to happen more when taking Liothyronine (T3)
But it would also have corrupted the hypothalamus-pituitary-thyroid feedback loop?
This is basically what the Endo said that as TSH was under one for at least 20 years I was over medicated. Which in turn stopped the pituitary from working and he doubted it would work now if I stopped Levo. He suggested trying to reduce Levo to see if Pituitary would work but not stop it as he was doubted it would work now. Maybe he confused me by saying I was hyper and not hypo, that’s what I couldn’t understand. Thank you
Yes, over medicated not Hyper, you certainly need quite a drastic reduction to get your fT4 back within range but you can't rush this so no more than 25mcg drop every 6-8 weeks and then retest. Once you get it back to around 20 then you can compare it with your fT3 levels and really see where you are... I really wouldn't worry about TSH levels
It seems to be very common for doctors to confuse being over-medicated with Levo for hypothyroidism with being hyperthyroid.
I think that perhaps they think it will confuse the patient. Or that it might be embarrassing for a doctor to admit that doctors might make mistakes and overdose a patient on Levo.
You could well be right with that one humanbean. I believe everyone on here is right, and I i’m hypo thyroid, but over medicated, it makes a lot more sense than saying I was wrongly diagnosed when I knew that I wasn’t. But of course they won’t hear anything, but their own opinion.
Do you have labs to check your T4 to T3 conversion status?
Have you had thyroid antibodies TPO and Tg tested to check for Hashimoto's/ thyroid autoimmune disease?
Looking at our earlier posts...
greygoose advised the following 16 days ago
If it's Hashi's it's certainly possible for the FT4 to leap up like that. Whereas I don't think it would be with Graves' - and the FT3 would also be high.
This endo claims you have had HYPER rather than HYPO thyroidism for the last 30 years and have been wrongly medicated....if so you must have felt unwell for all that time! How did/ do you feel?
Do you have your historic labs including your diagnostic test, for the last 30 years which this endo quotes as "always showing a TSH of <010"? Did they? That's a very consistent reading over 30 years.
It sounds doubtful that all your medics over the last 30 years were wrong!
Something seems very odd in his analysis...but then again many medics are clueless about thyroid hormones. I think he's flying by the seat of his pants!
He also said that there was no way my thyroid would cause me to lose such a significant of weight and I need to concentrate on that rather than my thyroid
That's a cop out....he is diverting you away from the thyroid to weight management.
Lack of thyroid hormone, particularly T3, slows metabolism and make weight loss difficult.
An overactive thyroid usually causes weight loss BUT are we convinced that you are HYPERthyroid as this endo opines, rather than experiencing a Hashi swing which has temporarily pushed up your FT4 which in turn has lowered your TSH
So...without current, accurate testing it's difficult to say for sure but I wouldn't lose sleep over this meantime.
You've been given all the contact details (and more) for private testing by SlowDragon .....for peace of mind order a test.
Post the results and members will then have the basis for a more realistic diagnosis
All the test results I have show TSH as under 0.01. He did have access to my NHS medical records because he referred to them. My GP wanted to test thyroid again but it is too early. I reduced my Levothyroxine to 150mcg near the end of December so need 8 weeks from then to retest.
The weight loss is not intentional and even though I have reduced my Levo three times now I am still loosing weight. Nearly 4.5 stone now, I even lost over Christmas when I tucked into all the Christmas Fayre. He said that was a significant amount to lose in a short time and could not be attributed to thyroid
Yes I was advised to get more testing done and I was waiting to see this private Endo to get him to do all the necessary blood work. But because of his answer it didn’t happen. So I will ask my GP if she will do them. I’m hoping to speak to her tomorrow.
I also asked about autoimmune thyroiditis as I have a number of autoimmune conditions but he said no.
do you have your test results back when you were diagnosed though, in 1993? You are probably just overmedicated not misdiagnosed. I would be concerned about the weight loss, do you have any other symptoms, as that should be investigated in case there's something else wrong.
No I don’t have blood tests from back in the 1990s but I was definitely hypo I had all the symptoms and I was very ill. My doc at the time kept saying I was fat and needed to go on a diet. I had put two stone on in less than two months and I was super fit beforehand. I was sleeping through the day and night and everything hurt. I couldn’t even lift my arms up to clean my teeth. My brother was hyper thyroid. and I was the opposite to him it was only when I saw the moon phase. I asked my doctor for a thyroid test. This was done and the hospital phoned me to go there immediately. I was diagnosed at that time with hypothyroidism.
At the moment, I have lost a huge amount of weight which is very difficult when you are hypo thyroid, but I know I’m not hyper because I am again sleeping for 12 hours a night waking up at lunchtime and asleep again by four. My hair is falling out my skin dry et cetera
I am very concerned about the weight loss as I’m still eating well And I’m now looking like a skeleton with saggy skin I don’t like the look. Being hypothyroid as you know makes it very difficult to lose weight which is why I’m totally confused. But I never do anything normal so it’s nothing new
some of the hyper symptoms can be quite similar to the hypo symptoms, my worry would be that you were over-medicated if your T4 was as high as T4. 32.7 with a reference range of 12 - 22 pmol /L. I would be tempted to try to get your T4 back into range, even if its at the top of the range. But I don't think it would cause such a dramatic weight loss and I would probably run a full blood count or one of those wellwoman blood tests, just to see if there's anything else at play... whether WBC are all normal etc. Hope you feel better soon.
Thank you strawberry,sorbet (nice name!). It’s only been since August that my T4 has gone so high, and I’m wondering whether it’s anything to do with the change forced upon me from Teva brand to mercury pharma brand. My Endo was quite happy to have my T4 at the higher end of the scale, as long as T3 was within range.. In August my T4 was 22.7 and T3 3.6. My thyroxine was slightly reduced at that point, but my numbers went up mot down.. There’s no fun in being normal 🤣
personally I think I’ve got a problem with conversion from T4 to T3. I have reduced my levo to 150 MCG per day so hopefully that will bring my numbers back into normal range. Fingers crossed
If this endo saw your blood test results going back to whenever, and saw that your TSH was suppressed, then he must also have seen your low FT3. But, it would seem, he not only has no idea what T3 is, he is also ignorant about what TSH is and what it does - and, more importantly - what it doesn't do. The TSH cannot make you hyper. It is low because the pituitary, at some point, decided that you didn't need it any more. Whether or not the pituitary has now stopped working is neither here not there, a low TSH still does not make you hyper.
What makes you hyper is high thyroid hormone levels: FT4 AND FT3. Not just FT4, both of them. But your FT3 is too low, it's below mid-range, therefore you cannot be hyper despite the high FT4, which in turn causes the low TSH (not the other way round!). So, knowing that you are taking levo, the obvious conclusion is that you are taking too much levo and are over-medicated, NOT hyper. I hope to god this dolt-head never tries to get a job as a detective at Scotland Yard! 🤣
So, no, you weren't misdiagnosed, don't worry about that. But, has anybody investigated your weight-loss other than telling you you're hyper? There could be other reasons. Personally, I have no idea what they might be, but I'm not a doctor. Let those that are do their jobs for once!
Thank you. It confused the hell out of me saying I was hyper when I knew I wasn’t. My GP wouldn’t send me for any other tests for weight loss until my thyroid was sorted out. At least this private endocrinologist that I saw has sent a letter to my GP to point out that there is no way any problem with my thyroid would cause that significant a weight loss and this should be investigated first.
It cost several hundred pounds to see this so-called specialist who had wonderful qualifications but he was no better, if not worse than my NHS Endo. And I didn’t think that was possible.! But I couldn’t see him until April!
Another day another fight tomorrow I will be calling my GP and insisting on proper investigations. Now that the Endo has said it’s not my thyroid that’s caused the weight loss.
Sometimes I lose the will to live today is one of them and tomorrow probably will be as well🤣🤣
Many thanks for all your help. I really appreciate it.😁
I have a feeling that this wonderful Endo saw the weight loss and low TSH and thought "I know what that is - hyper!" and felt all smug.
But the facts dont fit that, Never mind, I am a super Endo and know better, lets ram a round peg into a square hole. Now you have a diagnosis, pay me my money.
Shocking!
The weight loss out of the blue does need to be looked into, separately from the thyroid. Ask for some liver tests, to rule that out.
Agree with everything you said. At the time I was so shocked but after the wonderful responses on here I wish I hadn’t wasted my money! I kept saying the original diagnosis of hypo was correct because I had to tell the GP what blood test I needed. My brother was hyper so I knew the symptoms and mine were totally the opposite.
The hospital phoned me when they got the blood test results. I saw the Endo and he told me I was hypo and have been ever since. That was 30 years ago, but I’ve just been left for so long without testing. I was obviously being over medicated.
I’m waiting for his letter to be emailed over to me which will make very interesting reading. The only good thing that came of it was he is telling my GP to forget the thyroid because there is no way I could lose so much weight because of the thyroid. Now hopefully she will approve the scans that I need and the ENT will have the information to sort out my parathyroid.
If you have positive parietal cells you should be referred to gastroenerologist for investigation of possible malabsorption and possible autoimmune gastritis which can cause it. It would significantly impair your B12 and vitamins absorption. Coeliac disease should be ruled out as well. All of these impact thyroid too and cortisol could be playing a part in it all too. Lots of avenues to explore for doctors if they care to start doing their job properly.
I bet you came out of there feeling like you had been slapped with a wet haddock! I waited a year for an Endo appointment, it came as a phone call where the Endo decided I was sub hypo from blood results over a year old. I told him I had been diagnosed with Hashi's 17 years ago and he just hurumped! He then sent me a shitty letter full of old fashioned ideas, so I sent him back a letter with all the latest research. He is phoning next week so that should be fun!
🤣🤣🤣🤣 you are right on the wet haddock !!! I was lost for words and, trust me, that’s not like me at all !’ My normal NHS Endo is exactly the same. A phone call once a year if I’m lucky. But because of the weight loss it was all put down to thyroid and they wouldn’t do any other tests. So reluctantly I went private. Well the only good thing to come out of it was he said no way would I lose that amount of weight through thyroid. He’s told my GP do she can’t use it as an excuse anymore. So now looking forward to full body scan, that will be a nice trip out. Also found out today I’ve got to have an op I think on my parathyroid but they could be taking the thyroid too as there’s not much left.
My social life for 2024 is looking non existent unless you class hospital visits as social occasions 🙄
Good luck with the phone call next week. I’d like to be a fly on the wall for that one!
thank you I am waiting for the intrinsic factor results will take awhile . I do have antral gastritis and as my B12 is so high, I am assuming there is a problem with absorption.
Yes, it’s all very complicated, but no doctor seems to talk to the other and I am really relaying information from one to the other so that everyone is in the loop. I think that’s the only way I’m going to get the answers I need.
At the moment I’m focusing on why I’m losing so much weight so quickly. If the test will come back clear then I’ll go back to getting blood teststo answer the thyroid and other challenges.
Thank you for giving me more homework🤣 but seriously I appreciate your help. Thank you
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