I was wondering if anyone could look at the follow-up blood test result. I would like to emphasize that NO MEDICATION was taken due to allergic reaction, muscle swelling and increased pain. Levothyroxine was only taken for 2 days, the smallest dose possible to minimize reaction then had to stop.
TSH - 7.18 mu/L (0.27-4.20mu/L)
Free T4 - 15.7 pmol/L (10.80-25.50pmol/L)
I am going insane a bit here to be honest. I was told by the gp that it's impossible to have hypothyroidism since birth, despite the evidence of genes that show congenital hypothyroidism.
Thank you.
Written by
snowmoon1
To view profiles and participate in discussions please or .
I've just had a look at the previous post's , presumably these are still your boyfriends results ?I think it would be interesting to find out what fT3 level he has , as there was not one done last time either.
Did he ever have a positive test for TPOab or TGab ? (to indicate Autoimmune cause of hypothyroidism)
I think the Genetic variations you're referring to are the DIO2 gene variations , which is not the same thing as congenital hypothyroidism.
DIO2 gene variations mean there is less efficient conversion of T4 to T3 in the cells , but it doesn't stop it happening altogether, and it doesn't make you hypothyroid, it's quite a common variation to have ... what it does mean is it makes it harder on you if your thyroid fails to produce enough T3 directly anymore due to hypothyroidism or having it removed.
However something is clearly raising his TSH above normal, and even though it has improved since the previous test of 9 something , 7.18 is still too high , and so if this is his second over range TSH, he would be diagnosed as subclinical hypothyroid , and could be offered treatment if he has symptoms.
But, it sounds like you've already tried that and hit problems with a reaction to it.
So i'm not sure what to suggest next to be honest.
Hopefully someone else will be able to be more helpful.
Thank you for taking your time to answer me. Back in November he had his thyroid peroxidase antibody tested. <15 was the result. The range for that is <35: Negative
Yes, medication has been prescribed that he can't take and the gp is not willing to investigate or listen. Upon suggestion to give a call to an endo to ask why he has trouble with the medication, the gp flatly refused to do so and went back to say that it's fibromyalgia.
You can inform the Doctor that fibromyalgia DOES NOT cause a TSH of 7 (or 9!)That's the reason fibro is a somewhat controversial diagnosis ... because there is not a clinical test to diagnose it with.
Thank you for including the link. Levothyroxine from Teva that caused allergic reaction then asked for a new prescription and requested a more cleaner brand Wockhardt with less fillers and no mannitol in it. Tried T3, also T3 and T4 together. All of them made a big difference in mood, fatigue and look though.
Asked the gp if she could give a call to an endo to ask why he's unable to take the medication but she flatly refused, even though she said she doesn't know what else to do/suggest, why it is happening! She acknowledged that it is thyroid related because of eyebrow, hair loss but when we mention muscle pain, swelling upon taking the medication she goes back to saying that it's fibromyalgia and not related to thyroid.
Managed to get an endo referral back in January so waiting for that call. The gp made a referral to the rheumatologist and pain clinic and that's where things were left.
It seems too soon to have tried t3 at this point, Would have thought they needed to go through all the available levo preparations first to try and find one that didn't give problems , Some people on here take an antihistamine before it to deal with this, but i'm afraid i have no experience with allergies (or fibro , except i'm a bit suspicious of a fibro diagnosis being blamed for everything else!)
Especially i someone who clearly has a thyroid issue .....
How long has he managed to stay on anything so far before stopping it ?
First when we knew nothing about hypothyroidism, treatments and possible reactions he simply started taking Teva levothyroxine. I think he endured it for 2 weeks with antihistamine. Then the reaction got so severe he almost died, could hardly breath, swallow then took antihistamine and after that he stopped taking it for a while. In the meantime, I came across a post here about reaction to mannitol and it made sense what happened. Told the surgery what happened and completely dismissed him that it's impossible to have allergic reaction to T4 and left him like that. I think that was back in November, early December. Tried it again I think the end of December, another try early January only for a day or so as his muscles got extremely painful.
They ignore his genetic predisposition completely. After the follow-up blood test gp said it's impossible for him to have hypothyroidism since birth. Not sure how she got to that conclusion without any scan or ultrasound.
The genetic Dio2 results thing is not an issue at this point, and won't be of interest to a GP, it doesn't show hypothyroidism since birth , that's a different thing completely, it just shows a less efficient conversion of T4 to t3 , but there is still is some conversion happening......dio2 variations make it harder for people who then become hypothyroid to manage on just levo, that's all , .. having the variations doesn't make you hypothyroid.
It is the high TSH result that shows there is a thyroid problem here. don't expect a GP to be interested in Dio2 results ,( even a lot of endo's aren't interested in them !)
So once he'd got a different brand to Teva, which does upset a lot of people, he's only had a couple of days in December , and a couple of days in January ?
Right, very strange for me not wanting to look at everything but thanks for pointing this out. He had symptoms when he was little though. Ended up in hospital due to constipation and was never able to sleep at night as a child. He slept 4-5 hours mostly.
He took Wockhardt levothyroxine. First day was fine, no reaction then 2nd day muscle pain, swelling started again so he stopped.
OK , so by the sound of it after just Teva and Wockhardt , it's far too soon to say you've tried all the forms of T4 available, ( and too soon to have even tried T3 )There ARE various other brands (and even liquid forms of levo available i think) . Does the Doctor intend to offer any different forms of levo ?
or has he washed his hands of the problem.
edit - i'm confused b this comment , when was this ?
"Tried T3, also T3 and T4 together. All of them made a big difference in mood, fatigue and look though".
No. No help was offered after the first Teva levothyroxine reaction. We tried Wockhardt because of our own research not because of them trying to figure out what could be the problem. No call to a hospital pharmacist, no call to an endo, no referral until the gp told me - so what do you want me to do? - and I asked for a referral to an endo.Their solution is to leave him as it is.
I really appreciate having a conversation with you and thank you very much for taking your time to answer me!
So he's referred to endo , (who may or may not accept presumably) and you've no idea how long that will take.... and you've got a referral to a rheumatologist and a pain clinic , neither of whom will be able to do anything about treating hypothyroidism unless he can take the hormone in some form ....
And the doctor has only prescribed the Teva Levo and no other kind offered despite Teva being on record as causing problems in many people, and any other brand (& T3 ?) is self sourced ?
If i've got that correct then the GP needs to read up on alternative brands/forms of levo and try and prescribe some until he finds one that doesn't cause a problem.
He doesn't need an Endo to hold his hand to do that bit...(or does he? lol)
He might not want to , because some of them are more expensive , but still...
Waiting time will be close to 6months because of Covid to be honest. The referral to rheumatologist, pain clinic are because the gp associates the muscle pain with fibromyalgia and not due to medication. So, to see herself as being 'productive and helpful', she referred him back to those departments.
Nothing else was prescribed, nothing else was offered and honestly they weren't even aware of Teva causing problems. T3 was self sourced because we thought it would start moving things due to having hard time converting T4 to T3.
It hasn't occurred to them to offer other brands, it hasn't crossed their mind.
I am not too sure how helpful an endo would be either. Don't know what kind of doctor would be willing to listen and try to figure out what's the reason behind the increase pain.
So that's 0 out of 10 for being helpful so far then...Really sorry i'm not managing to be much help either , but at least it helps if someone listens .
Yes, absolutely not helpful at all. That's ok, I am glad you mentioned that they don't really pay much attention to genetics. And I do appreciate you having a discussion with me Thanks again and take care x
Maybe you need to start compiling a list of thyroid meds based on others experience here and present them to the GP and get her to start prescribing based on your list.
I have a terrible reactions to additives in thyroid meds and the only one Ive been able to take without issues is 50mcg so I have to take more than one per day along with T3 which I haven’t had any trouble with.
Im on L-thyroxine (2 - 50mcg) and 10mcg Cytomel t3 ..... I have issues with pretty much everything (acaia) is a huge problem for me and I would get body wide rashes constantly until finally I settled on 50mcg (white) which seems to have the least amount of offensive stuff inside of it and hasn’t caused the awful rashes. Yes, I went through allergy testing and shots for about 6 years (prior to thyroidectomy).
Who told you that you can't have congenital hypothyroidism from birth, I am 53 years old and was diagnosed when 4 weeks old, time drs learnt more about this condition.
Thus is one of the reasons for the Newborn blood spot test (it currently covers nine conditions including hypothyroidism).
Congenital hypothyroidism
About 1 in 3,000 babies born in the UK has congenital hypothyroidism. Babies with congenital hypothyroidism don't have enough of the hormone thyroxine.
However, there are questions over how it works. I think the current version still detects TSH whereas there has been some argument that it should test Free T4 (as well?). Also, timing is important. Too early and TSH might not have risen sufficiently to indicate a problem. Too late and at least some damage might have occurred.
I suspect it also doesn't detect slight thyroid issues.
Thank you for the information! As I read, the heel-prick screening test only started in 1981. He was born before that. However, it was never picked up later either, even though there were signs of constipation (hospitalized with it at a young age), inability to sleep, leg pain.
The Guthrie heel-prick test started in 1962 in the USA, I believe, but I am not sure which tests were included, over the years, and across which countries.
Looks like the UK gets a mention as having started roll out for thyroid issues:
Screening for congenital hypothyroidism
BRITISH MEDICAL JOURNAL LONDON, SATURDAY 5 JULY 1980
The gp said that it's impossible that my boyfriend had hypothyroidism since birth. I know about the screening. However, I am not sure if it was done at all as even years later it hasn't been picked up. I am glad you've been diagnosed with it Thank you for your reply.
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.
blood tests say over medicated on levo but feel awful without it 
Low TSH Blood Test Results following changing to Armour Thyroid
My follow up blood tests, what do they show?
Blood test results, TSH up and down
Help with blood test results?
