Just found this site and am blown away with the support you show each other.
I’m hoping you could offer me some advice, too. I suspect I may have Hashimotos but am not 100%.
I’m a 44 year old female and gave birth 3 years ago. Last year I had a bout of something viral, which really knocked me out and since then I haven’t really been myself. Main symptoms are:
recurrent mouth ulcers that are really painful;
gum disease (now under control);
episodes of debilitating lethargy;
Low mood/irritability/tearful for no reason;
Dry mouth and excessive thirst
I had my thyroid tested in November and it seems I have very high TgbA (379) but the other markers seem within range.
What do you make of my results and do you have any advice?
Thanks in advance! 🙏
Written by
Gogifi
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Your fT3 and fT4 are both low normal which could well be causing hypothyroid signs and symptoms. However, it will be very difficult to get a doctor to give you a trial of thyroid hormone as they fail to recognise that having BOTH low normal is not usual.
Before you push for thyroid treatment I would double check you don't have diabetes first as it could explain these signs and symptoms. (I am NOT a doctor).
Jim, I hadn’t realised that “having BOTH low normal is not usual”. Is that because FT3 is boosted as FT4 falls, only for FT3 to fall as well later on? Or do I understand nothing?
In primary hypothyroidism the thyroid starts to fail and as fT4 falls TSH rises. This stimulates the failing thyroid to secrete more T3 and increase T4 to T3 conversion. Thus, in early stage primary hypothyroidism TSH is elevated, fT4 low and fT3 normal. There is a hypothetical discription of this Figure 1 of this paper researchgate.net/publicatio... .
This is why TSH and fT4 are good indicators of primary hypothyroidism. Figure 2 illustates what happens in secondary hypothyroidism with TSH falling and leading to low fT4 and fT3.
I see many patients on the forum with quite severe symptoms who are somewhat between these two cases, their fT3 and fT4 are low normal but there TSH is normal. With fT3 and fT4 borderline low we should expect moderate to severe hypothyroidism as pictured in Figure 1 and Figure 2. The only difference is TSH is normal, it doesn't fit the pictures shown in the two figures - this confuses doctors! The important point is the thyroid hormones are the same as in recognised cases of primary or secondary hypothyroidism. I also suspect that in these cases the TSH has low bioactivity, so in effect TSH is low. The TSH assay measures presence not activity. In the words of Dr. Gordon Skinner "a discotheque and graveyard may have similar levels of presence but different levels of activity".
Your thyroid hormones are very low, no wonder you feel terrible. You are hypothyroid. I believe the thyroglobulin antibodies indicate hashimotos. The 'normal' range that doctors work to is pretty arbitrary, and normal for one person is definitely not for another person. However, GPs will generally only act once you're out of range. My advice is to keep a diary of symptoms and the number of 'active' hours you have each day, plus how much you sleep/rest. You could also measure your pulse and temperature. Do this for a week or 2 then go back to your gp with your evidence. Explain how its impacting your life and ask to be referred to an endocrine consultant if the gp is unwilling to do anything. Unfortunately you'll probably have to fight to get things done. Also, read up and learn as much as you can. Good luck x
I see you joined the board today … WELCOME!!!!!!!!!!!
We are glad you found us and I can assure you that you are in the right place!
When I read your post it reminded me of myself… before joining this board I would see my thyroid numbers “in range”and I would move on and not think about it. Despite symptoms, I was told “Normal!” Nothing to see here.
With a little education from this board, I look at your numbers and see:
- TSH is too high…
- free Ts are scraping the bottom … I’m not sure anyone would feel well at those low levels.
Symptoms like lethargy and irritability are very typically related to thyroid. But I will also say that excessive thirst and mouth/gum issues are more typically associated with diabetes as I think Jim above was saying. Have you had your blood sugar tested recently?
Also, what country are you in, as that makes a huge difference for how one approaches next steps.
Yes, same here, my numbers were similar and it was enough to make me feel dreadful. Just to add, I got fed up waiting for the NHS to acknowledge my hashimoto's, and was diagnosed by a private GP and got a private prescription. There's a cost of course but not as bad as I'd have thought. Just mentioning it in case that's an option Gogifi as when I first joined I didn't realise it was possible; we shouldn't have to do this, and others may have advice on how to get treated by your GP, if you're in the UK.
Also agree with others, hypothyroidism & hashi's have many weird symptoms (thyroid UK have a page devoted to them) but I'm not sure about thirst and mouth ulcers. If you also had dry eyes, it could be sjogren's I believe? as autoimmune conditions like to run in packs!
Mixteca of course, the GP is online and consults via zoom so anywhere in the UK is ok, not sure about outside the UK though. I'll drop you a PM as per forum rules
I agree with all the sound advice given here plus the addition by FoggyThinker on Sjogrens. Some of the fatigue, thirst, mouth ulcers and gum/teeth issues are commonly seen with that condition. G.P. can advise testing for anti Ro & anti La but be warned that many Sjogrens sufferers are zero-negative and are then told they do not have the condition when they most certainly do! Gold standard test is lip biopsy.
I would follow up on advice given here first for Thyroid issues as you r T4 & T3 are a bit low whilst your Thyroid antibodies are suggestive of Hashimoto's.
Might be worth checking your basal temperature for 14 days to see if it is low first thing in the morning (keep a diary), then get checked out for Diabetes, then Sjogrens. The latter is difficult to get checked for and many G.Ps are sketchy on it. As with all these conditions it is a process of elimination and sadly, a bit of long haul to get the diagnosis but you will get there and the peeps on this forum offer good advice.
Wow! Thank you so much for all your replies. What a wonderful bunch of people.
Re: possible diabetes, my latest blood test for HbA1c levels were 33 mmol/mol so I’m thinking that looks ok?
Sjogrens - I’ve researched a bit and it kinda sounds possible, as I’ve also had a spout of blepharitis (a few years ago).
I’m intrigued as to why my TPA levels seem ok (which are the usual indicator of Hashimotos right?) whereas my TgAb is very high.
I’m hoping not to have to resort to medication, and would love to be able to heal myself with diet and lifestyle… am I being naïve?! I’ve been gluten free since July (which stopped my ulcers almost overnight and for about 3 months, but then they returned with a vengance). I’ve since cut dairy and eggs and alcohol out of my diet which has also helped with the ulcers and not feeling as fatigued, so I’m hopeful… but I’m still not sure exactly what’s wrong with me as I haven’t had an official diagnosis of anything.
jimh111 What you’re saying about having low T3 and T4 not being normal is interesting… What might it all mean do you think?
Here are a few more results from my latest blood tests. Not sure if they’re relevant or not!
total white cell count - 4.3 (4.00 - 11.00)
Red cell count - 3.93 (3.80 - 5.50)
Haematocrit - 0.38 (0.37 - 0.47)
MCH - 33.3 (27.00 - 33.00)
Serum ferritin - 47 (15.00 - 300.00)
Serum folate - 19.6 (>3.00)
Vitamin B12 - 578 (180.00 - 900.00)
I will keep a diary - that sound like a great idea. (Remembering all my symptoms and what happened when is especially difficult, what with my brain fog + being a mother of 3 + trying to hold down a full time job 🤯)
I’d also be interested to know whether anyone’s had any joy trying to heal or control (or even reverse?!) their hypothyroidism / hashimotos with diet and lifestyle alone…
I have an inkling this is going to be quite a learning curve for me!
I only had Tg when I did my first test, though on my second both were out of range. I think I've heard people have trouble getting diagnosed/prescribed even with TPA though...
Your ferritin's very low and best you get a full iron panel done. I had a lot of mouth ulcers with B12 deficiency, which eased up after regular injections.
I’ve basically been trying to heal my gut for the past few weeks, thinking that might be the root of my problems.. some kind of autoimmune problem. My doctor thought the mouth ulcers I keep getting might be a sign of oral colitis…?! Aargh, such a minefield!
I don't think your thyroid is failing but in truth getting a high TSH may be the best way of getting treated.
Things can get very complicated but it makes sense to check for the simpler things first. Are you taking any medications or supplements? They could interfere with thyroid hormone action.
Usually with a failing thyroid gland TSH jumps up high, fT4 falls and the body works to preserve fT3 levels. In this case fT3 is usually around average and TSH quite high until fT4 is below the lower reference limit.
In your case both fT3 and fT4 are low normal. There can be many causes, a concurrent illness the most likely. What gut problems do you have? The pituitary could secrete less TSH than expected, this can occur after a long period of thyroid hormones being too high. Also, substances in the environment, endocrine disrupting chemicals (EDCs) can affect everything to do with thyroid hormones (endocrinologists are hopeless on this).
I think your best strategy is to check out your other illnesses / medication and if this is eliminated seek out a doctor who will treat you based on your signs and symptoms rather than being a slave to the blood tests.
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Help and advice please I'm at my wits end 
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