I am new here, and I would love to have your opinion on my symptoms. I was diagnosed with Hashimoto's in 2022. At that time I was (and still am) felling very unwell: very fatigued, brain fog, memory problems, depression, anxiety, post-exercise malaise, constipation, always congested nose, chronic pain and unexplained weight gain. My GP here in French Polynesia referred me to an endocrinologist, who ran some tests and told me I had Hashimoto's, but no hypo or hyperthyroidism. She refused to give me any kind of treatment, and so did my GP, because my TSH was under 10.
Since then, I am still having the same symptoms and I am starting to be really anxious because the fatigue and brain fog make it difficult to work (I am a lawyer).
In 2024 I wanted to have another medical opinion, so I went to see another endo who, despite my symptoms, told me quite agressively that there is NO WAY my symptoms are due to hypothyroidism, but didn't have more answers.
So now I am confused, is it hypothyroidism? Or depression as my GP told me, or something else?
Here are my latest results (october 2024):
TSH : 2.75 (0.35-4.94)
FT4 : 10.26 (9.01-19.05)
FT3 : 3.77 (2.43-6.01)
TPO antibodies : 67.6 UI/ml (1.00-5.61)
Tg antibodies: 8.20 UI/ml (should be less than 4.11)
LDL cholesterol : 1.46 g/l (have to be under 1.60 on my results)
Ferritin : 45 ng/ml (15-200).
Folates : 14.9 ng/ml (3.1-20.5)
Vit D : 45.09 ng/ml (have to be more than 30 on my results)
Vit B12 : 429 pg/ml (187-883)
Thanks for your replies!
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TropicalCookie
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Your bloods are totally consistent with symptom-causing hashi/hypothyroidism.
Your TSH is slightly high, but your free Ts are dismal, and your other vitamins are deficient - as many of us experience.
It’s very common the world over to blame everything on depression.
I have no idea what the healthcare system is like where you are - but there is no doubt that your bloods are evidence of what’s causing exactly the symptoms you are experiencing.
You’re young, clearly managing a busy and demanding career, and so I am glad you’ve found this board to ask your questions.
Your health diagnosis is pretty clear.
Navigating your healthcare system to get what you need is a totally different challenge.
But you are not crazy, your symptoms are real and they are due to your thyroid. There may be other things, we don’t know you, but your thyroid numbers are really too low to feel well. As for what a good, knowledgeable doctor would do - it would be helpful to know a little more about your history.
How many thyroid panels have you had and can you share a little more about your history?
Your TSH is too high and should be around 1 and I think you need treating with Levothyroxine because you are hypothyroid and it is Hashimoto’s disease an autoimmune disease The antibodies attack your thyroid until it is completely destroyed and there is no cure I am sorry to say
Also your ferritin is too low and should be over 80 I ate pate to raise mine. Your vitamin D could be higher I take BetterYou vitamin D spray
What you have just learnt is that doctors the world over are very, very ignorant about thyroid. They only look at the TSH and if that isn't high enough for them then they'll tell you there's no problem. The don't know what TSH is or what it does or how it works, and therefore a lot of people go undiagnosed.
It's crazy but they test all these things and then ignore the results because they don't understand them and haven't a clue how to interpret the results.
FT4: 10.26 pmol/l (Range 9.01 - 19.6) 11.80%
FT3: 3.77 pmol/l (Range 2.43 - 6.01) 37.43%
These results are very clearly telling you that your thyroid is not normal. If it were, these two results would be around 50% through the range, with the FT3 slightly low than the FT4. So you obviously do not have enough thyroid hormone in your system to make you well. And it's the FT3 that causes symptoms, not the TSH, as they seem to believe.
So, the problem here is that your TSH does not correspond to your thyroid hormone levels. With such low Frees, the TSH should be much higher. And as that's all they look at, they think there's not a problem because your TSH is still in-range.
What time of day was the blood draw for these tests? TSH varies throughout the day, being highest before 9 am and at its lowest around midday.
Your high antibodies alone should be telling them that there's a problem, but they don't know what antibodies are, so they will tell you that's irrelevant. It isn't. It's a sign that you have autoimmune thyroiditis - aka Hashi's - where the immune system attacks and slowly destroys the thyroid.
Another clue that they miss is the low nutrients. When you are hypo, you usually have low stomach acid, which makes it difficult to digest food and absorb antibodies.
Your ferritin is too low. With that range it should be at least over 100.
Your folate is good.
Your B12 is too low, should be at least over 550.
Your vit D should be around 40-60ng/ml (Edited by SD)
And these low levels of nutrients must also be causing symptoms. You must feel terrible!
I expect that you do have depression. But depression is not the cause of all your other symptoms. Depression is a hypo symptom itself.
I expect the endos you saw were diabetes specialists, weren't they? Most of them are. They know nothing about thyroid but think they know it all! It's very, very hard to find a real thyroid specialist, I'm afraid. And GPs just don't have the training. It's the same just about everywhere. So, unless your TSH comes up a bit, or your Frees drop below range - as they will eventually - I'm afraid you're stuck. And I wish I could tell you what you can do about it, but I just don't know. Except that you mustn't give up and accept what they tell you. Stick to your guns because you are hypo and your symptoms are caused by your thyroid. x
A Vitamin D level of 45ng/ml corresponds to 112.3 nmol/l, so that is actually quite good. It is a simple multiplication of 2.5 to get from ng/ml to nmol/l. 😉
Yes correct ! Lived in Greece for 15 years where D was measured in ng/L. The Grassroots (US) link explains the levels and how to convert. 60 ng/L seems the level needed to prevent most conditions 🌻
I'm sorry to hear this but it sounds very similar to my journey. I finally became so frustrated with my GP I went to an online GP thyroid clinic. In one meeting I felt validated for my symptoms and was given a prescription and a plan. I cried. I'd been to the GP time after time. My TSH was around 5 but my FT3 and FT4 similar to yours. Like you, the brain fog was just debilitating for me as I run projects, and I think my anxiety was partly caused by that! I can't afford not to be able to think and constantly feeling I was probably missing something important. Within 48 hours of starting levo, the brain fog lifted. I feel so much better. The drugs themselves are cheap, so my private prescription was not much (and I get a three month supply). I'm still only 6 weeks in, but I'm so glad I took the chance. Best of luck.
Just to add with Hashimoto's your immune system is on the attack and trying to disable your thyroid -
You will be liable to erratic own daily thyroid production - and this does cause ' swings in symptoms ' - with you feeling hyper - but as with any swing - it swings back with your thyroid further damaged and leaving you with symptoms of hypothyroidism.
The thyroid is responsible for the full synchronisation of your body - from your physical ability and stamina through to your mental and cognitive functions, your emotional and psychological well being, your inner central heating system and your metabolism.
In short - your T3 and T4 are too low in the ranges for you to fully function in all areas of your life - and guessing your body prioritising your heart function and likely short changing your brain and cognitive functions.
You need to see a thyroid specialist - but have no idea where this may be from French Polynesia.
You might like to read around on the research and suggestions of Dr Izabella Wentz who many forum members find validating and follow - thyroidpharmacist.com
You might like to look on the Thyroid UK website - thyroiduk.org - for all things thyroid and there is a very thorough list of symptoms for both hyper and hypo - thyroid - and for some the symptoms are experienced whether at either end of this spectrum of ill health - but it is an excellent tick box exercise that just may help you feel better equipped going forward.
I am very sorry to hear that you are not getting the treatment you clearly need. As others have stated, your free T4 and T3 levels are low, however this does not really correspond to your TSH levels. In a person without thyroid disease, the TSH goes high in response to low levels of thyroid hormones, and when thyroid hormones are high again, the TSH goes lower. However in people with thyroid dysfunction, this pituitary feedback is not working properly or even broken. This is why your TSH is still not that high, despite your T4 and T3 being very low. Another sign that your thyroid is struggling is that your T3 is a bit higher than your T4, as your Thyroid is trying to compensate for the lack of T4 in your system.
This is a publication that highlights that the TSH-T4 axis is not working in thyroid disease, as it does in a healthy person.
I am not sure what the treatment guidelines are in French Polynesia, but here in the UK you either have to have a TSH above 10 or a TSH above the reference range but below 10 on two different occasions and being symptomatic, before any treatment is offered. You could try to find out about the treatment guidelines in your country, but I suspect that they may be similar to other guidelines.
If you cannot get a diagnosis, the best you could do at present is to improve your levels of ferritin and Vitamin B12. Your Vitamin D looks good (45ng/ml are 112.5 nmol/l), but you do live in a sunny country after all! 😉
We recommend taking a good Vitamin B complex with folate and B12, if you take it with magnesium (bioavailable forms are Mg-citrate, -glycinate, -maleate and -taurate), it helps with the absorption. I would also try to improve your iron storage by increasing iron rich foods or supplementation.
Hi Tina_Maria . i think this part of your reply needs a little refining/ discussing : ( sorry Tropical Cookie , this is going to sound extremely technical, i'm just trying to clarify a nerdy point with Tina _M)
"However in people with thyroid dysfunction, this pituitary feedback is not working properly or even broken. This is why your TSH is still not that high, despite your T4 and T3 being very low........// .......This is a publication that highlights that the TSH-T4 axis is not working in thyroid disease, as it does in a healthy person. frontiersin.org/journals/en... "
the disjoint on feedback (HPT axis) is related to patients using thyroid hormone replacement ~ taking T4 alters things by giving patients a relatively higher fT4 / fT3 ratio than the healthy thyroid produces and consequently giving them a slightly lower TSH (than people who are not taking any thyroid hormone replacement)
the disjoint described in the paper by Midgley/ Hoermann /Larisch/ Dietrich does not apply before thyroid hormone replacement , it happens after replacement , as a result of the artificially altered T4/T3 ratio.
paper says : " The control mode may shift from feedback to tracking where TSH becomes positively, rather than inversely related with FT4. This is obvious in pituitary disease and severe non-thyroid illness, but extends to other prevalent conditions including aging, obesity, and levothyroxine (LT4) treatment"
so if TSH is not as high as we would expect before thyroid hormone replacement is used , we need to look for another explanation for example : possible problems with pituitary itself ( which produces TSH).... or with hypothalamus (which produces TRH to ask pituitary to produce TSH). or some other cause for lower than expected TSH
However , in a case where TSH is nearly 3 , this does suggest that the TSH has probably already risen (somewhat) in response to lower than 'usual' (for that person) thyroid hormone levels , since we know that it is most common for TSH to be at around 1 or even slightly lower, in healthy people.
it's a while since i read that paper in detail , and unfortunately diogenes (Midgley~ one of the authors ) is no longer with us , he would have been able to clarify the issues much better than i can , so i hope i'm not too off beam here , hopefully someone will put me right if i am .
I agree that this broken feedback loop is more evident once you start levothyroxine treatment - however I would argue, that this blunted feedback response does not just occur overnight when you start treatment, but has been developing for quite a while. Hence you could see a lower TSH level as expected, even before your diagnosis and this may even make it difficult for some people to get diagnosed.
And yes, agreed that the T3 has risen somewhat, but a T3 at only 37% through the range and a T4 at 11% should definitely elicit a higher TSH response as it was in this case. Of course there can be pituitary problems and that should also be investigated, but at the moment this is all speculation, and we are trying to discuss possible explanations.
Thanks to every one of you who took the time to reply and explain everything, I really appreciate and feel less alone! It is clearer now, and I am so relieved to know that I was not crazy all this time! I was really starting to doubt myself.
To tell a little more about my medical history: I had a really strong health and very active life (never sick, no major medical issue) before octobre 2020, when I had covid for the first time. I was really sick and ended up with brain inflammation. I was hospitalized for that. I had important neurological and cognitive problems, and my nervous system was a mess. I went to see specialists but they were pretty clueless about what was happening, and I never had any treatment beside drugs for the chronic pain. Things got a little better as the years went by, but then in july 2022 I started to feel really fatigued, with terrible brain fog and depression. Weight started to go up.
My mum, who also has Hashi's, told me that those were the symptoms she had before being treated (in her mid 30s, just like me), and told me to go see my GP. He referred me to a endo, who ran a full thyroid panel and told me I had Hashi's, but my thyroid was completely fine. The endo recommended that I see a psychiatrist for the depression, and I did. I had antidepressants for a year, and felt better with the depression, but didn't like the side effects so I stopped, and the depression came back.
I have a full thyroid panel done every 6 months, but the results are always the same. FT4 went a little down since 2022, but FT3 and TSH remain the same.
In total I saw 6 doctors since 2022, 2 endos and 4 GPs, here in French Polynesia. The answer is always the same: no treatment with a TSH under 10. Those are the current french healthcare guidelines. So I am discouraged. I feel very unwell but for now I don't want to lose more time or money. I could try to see each one of the 40 GPs we have here, but I am afraid the answer will always be the same. Over the counter desiccated thyroid is not an option because it is prohibited under the french law. I was thinking of maybe seeing someone in France or Germany, the next time I go there, if I can find a recommendation for a doctor in particular.
Anyway, thank you so much for your replies. I will focus on raising my vitamin levels. I am supplemented since 2022 but my levels take a long time to raise. Should I do something for the low stomach acid?
Just to let you know, the current German Healthcare guidelines are also stipulating, that treatment with levothyroxine should not be initiated when TSH is below 10 (similar rule to France and the UK).
The only other option perhaps could be to make an individual request. As you have been formally diagnosed with Hashimotos, there is now a precedence that you have an autoimmune condition that will get progressively worse if not treated (and especially as your Mom had it as well, there is a genetic predisposition too). And as you already have symptoms that are impacting your day to day life such as tiredness, brain fog and depression (which is very much a symptom of low thyroid hormones), you could perhaps make a request for initiating treatment on a trial basis to see, if this would make a difference and improve your symptoms. You could say, that if there is no significant improvement, treatment can be stopped again. It might be a long shot, but perhaps worth exploring?
Hopefully improving your nutrients will help with some of your symptoms and things might get a bit better. Wishing you all the best and please let us know how you are getting on.
Do the German Healthcare guidelines say what to do if TSH is high but under 10?
I think some guidelines are read as if a doctor should never treat under 10. But I suspect that a better approach is to repeat to see if it was a one-off. Maybe the guideline writers in Germany have done a better job of expressing that than some others...
Well, the Germans are in general sticklers for rules, so there may not be much room for discussion - although the guideline mentioned a publication that treatment could be initiated with an elevated TSH, and another publication would only consider treatment if TSH is >6. But how this is handled in clinical practice is difficult to say, as I know from friends that GPs are very much guided by TSH (although they do occasionally measure T4 as well).
The newest guidelines also mentioned that therapy in patients older than 70 years should not be initiated when TSH is <10, in patients older than 75 years no initiation when TSH is <20! Given how much damage can be done even if patients are asymptomatic, this is clearly not good.
To reply to Greygoose: my blood tests for the thyroid are always drawn at 8 am, with no food since the last dinner, and after stopping my supplements for a few days before...
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