I posted here a while ago after having a dose of Levo increased but was still feeling unwell. I now have my most recent results after requesting vitamin and celiac testing and would like some help with them if possible.
Woman, 39. 10 months post partum. For context, I am still experiencing extreme symptoms which I assumed were caused by my Hashimotos diagnosis (July 2024). I am quite disappointed in the results because they have all come back 'normal' but I still feel unwell.
I will list results below; there are quite a few and I've included the ranges:
TSH: 2.5mu/l (0.27 - 4.2)
Serum Ferritin: 29ug/l (10.0 - 300.0)
Serum 25-Hydroxy Vit D3: 58.0 nmol/l (50nmol sufficient for population).
B12: 429ng/l (180 - 1000)
Folate: 5.7 ug/l (>4.0)
Serum tissue: very unlikely
Level 0.4 u/ml (<10.1)
Tissue Trabsglutinade Abs Iga: Negative
Haemoglobin Alc level: 36mmol/mol
Liver function: normal
Full blood count: normal
Urea and electrolytes: normal
Bone: normal
The last 5 go into more detail but I'm not sure if they're relevant. Can post if needed.
As you can see, everything appears to be 'normal', apart from my TSH which is still too high if I'm experiencing symptoms. I am at a loss and have an appointment with the doctor tomorrow to discuss the results and I need some of your knowledge to assist with my next steps.
Mos extreme symptoms are:
Hair won't grow/bald patches
Extreme mood swings
Sore throat and loss of voice
Weight gain
Dry skin
Severe allergic reactions
Swelling
Tiredness and lethargy/low mood
Digestive issues
She checked my neck for a goitre but said it wasn't swollen. My mother also has a tumour on her thyroid currently and I'm aware thyroid issues are/can be hereditary.
I trialled a gluten free diet when I was diagnosed but introduced in preparation for the test. I didn't see any major differences but I am going to cut it out again.
Any help would be much appreciated.
Thanks,
Written by
GippyKiyYay
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When I speak to the doctor am I entitled to ask for my T3 and 4 to be tested? What test do I ask for? Apologies for ignorance, I am still learning how to own this illness.
Weight gives us a guide.... 75mcg is an awful dose as it's enough to stop any thyroid production you were capable of and not enough to replace your real need 😬.... so you are ready for your next increase push for 100mcg, if they are hesitant mention the word 'trial'... you are probably going to need another increase in 8 weeks time as 125mcg is likely nearer your dose
In the meantime sorting out your supplements will help 🤗
Let's get you up to a full replacement dose with good vits and mins and then it's worth you doing a private test to see how well you are converting to the active fT3 hormone 🤗
It tends to be 1 step forward 2 back when building up your dose but we'll get you moving in the right direction
I personally would do a private test if she can afford it. The NHS tests are basic and my GP has never accepted medichecks even though they use the same labs. I don’t know if this has changed now because it has been a few years since I tested because I was in remission and feeling well.
Also when first diagnosed 15 years ago my vitamin D was 7 and I had to beg my GP for a special prescription I now use the Better You vitamin D spray on my tongue which is easily absorbed
Look at Medichecks they do a full thyroid function test for about £89. I wouldn’t get it until January if I was you. I paid a nurse to draw my blood and one time Medichecks sent me to my local hospital for the test. The nurse who took my blood actually used a smaller needle because they have trouble getting blood out of me
After you get the results but them on the boards so members can advise you That’s what I have done in the past
Not really worth testing until all the key things are tackled and on a decent dose, it’s going to take a few months and then a full test will be more useful
For me a little diluted cider apple vinegar with mother before eating stimulates more acid production, I find probiotics a bit like rocket fuel 😳 😂 but then I struggle with dairy, nightshades and histamine!
I have shown my GP my Medicheck results because he refused to test both my T4 and T3. He then says we don’t recognise Medichecks even though the NHS use the same labs. So he requests T4 and T3 which the labs doesn’t do because of NHS guidelines. He then decides to view my Medicheck results. This is a few years ago but. I doubt much has changed from what I can see on here and other forums unless someone can correct me over this?
I wish I had known sooner rather than later my GP kept telling me my results were “normal” for 2 years. I actually had a TSH of 0.002 which he and a dermatologist didn’t spot either who I had paid to see at The Spires. The dermatologist said I had female pattern baldness. I feel like asking for a refund because I still have all my hair. This was 15 years ago so things have improved but I am still shocked what some GPs miss on blood results
Gippy is on the initial build up of T4 with everything all over the place so a test isn't going to be much use, I agree a full test needed as soon as things have been stable for a few months and vits and mins can be retested also but this will be of no interest to the GP as they generally haven't a clue what fT3 is 🫤
I know they know nothing about thyroid levels. Thank goodness for sites like this one and others I visit. I don’t bother with my GP with my thyroid health. I was a patient of Dr Gordon Skinners he was the only doctor I trusted .
Some sites do tend to encourage early testing and adding T3 too quickly which really messes things up for most, we a have quite a bit to work with in this instance, often the quicker you try to 'fix' things the potential is to really mess things up for even longer 😕 and get in a total pickle
Aiming to get some good foundations in place first
Update: had my phone appointment with the doctor and she said, predictably, that all my levels were fine and that there is definitely nothing wrong with my iron levels. She also said my TSH was within range but would increase my dose this once... The stress and anxiety I feel every time I have to see or speak to an NHS doctor is getting worse because I know I am going to face this type of behaviour every single time.
I think that I should go private for my next blood checks. Very disheartened.
That is so annoying and i know what it is like to have your health in the hands of someone like that. Clueless comes to mind when I think of NHS doctors and I would go for a private test if you can afford it.
I think some NHS doctors actually enjoy keeping us ill!
This is great progress👏 Well done for dealing with them it is a painful process... so let's hope this increase sees you over the hump and heading in the right direction, not doubt you'll have the same battle next time but it gets easier to stand up to them and I quite like the challenge of re-educating them 😏 need to concentrate on raising Vit D and adding more iron rich foods like leafy veg and chicken liver pate a couple of times a week
You are right - it is best to focus on the wins and that she gave me an increase. I have been accused of being abrasive in my past appointments so I am constantly anticipating a battle and I need to grow a backbone and stand firm. I will get reading and do as advised in preparation for my next appointment. Many thanks again.
Abrasive? I have actually had a heated argument with my GP with documentation to back myself up. They don’t have the time or the interest to research thyroid disease. I used to see my GP visibly shrink in his chair when I walked in!
You might think they would understand that being abrasive is a symptom of feeling crap!
It is a bit of a read the room game and sometimes bamboozling them with fact works and other times keeping quiet and letting their lack of knowledge work to your advantage is the trick.... it's all a ridiculous game but we'll help all we can and knowing your not the only one being treated like this ups the anti 🤗 I just envision my daughter having to go through this 💩 and push all the harder for optimal treatment
Yes, you're right. I need to educate myself, quickly, so that I'm better prepared. Which is easier said than done when you have brain fog and feel like death. I have bought some literature to get me going and this group is amazing. I feel seen.
Now I'm feeling well and better educated than any of the medics I have to deal with on this subject I quite like to battle for better treatment knowing others are being hideously let down by the current system.... it needs changing for the benefit of all but especially our kids!
Yep, it comes down to lack of training and limitations of their out of date guidelines, when the scales fall from your eyes and you realise NHS health care isn't about optimizing health but more focused on just keeping you alive you then understand the need to take matters into your own hands
Yes the NHS is on its knees and throwing money at it isn’t going to fix it. It needs completely re-organising. My husband was a Patient Services Manager and his boss was an ex nurse.
If they only realized that treating thyroid patients effectively they would save a fortune on all the other issues caused by hormone levels it would be a start
This result says very clearly that you have Autoimmune Thyroiditis/Disease - aka Hashi's.
Whilst the antibodies themselves are irrelevant - i.e. they don't cause symptoms, etc - it is important to know that you have Hashi's because of the way it behaves (and doctors haven't a clue what it does!).
With Hashi's, your immune system has erroneously identified your thyroid as the enemy, and is launching sporadic attacks on it with the aim of destroying it.
During these attacks, the dying cells leak their stock of thyroid hormones - T4 and/or T3 - into the blood, causing levels of FT4 and/or FT3 to suddenly rise to hyper-like levels. And the TSH therefore drops very low.
This is what I call a Hashi's 'hyper' swing. And it is only temporary. Eventually - but impossible to tell how long - levels will go down by themselves, no need for intervention of any kind, and you will be hypo again - only more so, because there will then be even less thyroid tissue capable of making hormone.
Doctors have no idea why this happens and are likely to accuse you of 'abusing' your levo, and start talking about 'going hyper' (physical impossibility) and wanting to put you on carbimazole (anti-thyroid drug). Neither of those things are true, it's just the Hashi's following its game-plan.
Eventually the disease will achieve its aim and your thyroid will be destroyed, and you will be completely dependent on exogenous hormone. And, I'm afraid, there's no way of stopping it, and no cure.
Hashi's is the leading cause of hypothyroidism in the Western World, but the medical profession is still very ignorant of it. Which is why they dismiss anti-bodies - and often neglect to even test them. So it's good if at least the patient knows what's going on!
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
4) gluten
Tissue Trabsglutinade Abs Iga: Negative
This is coeliac test - result is negative
Good that GP is following guidelines and has tested
Now you have had the test you can look at trialing strictly gluten free diet
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
just tagging McPammy for you to alert her to your reply Gippy . ( other wise she won't know as you have replied 'to yourself' .... you need to use the reply box directly beneath the reply you are responding to , this sends an Alert )
p.s i don't know why mcpammy mentioned cancer, but unless i've missed something , i don't see anything in your posts to raise concern about thyroid cancer.
Thyroid cancer doesn't usually affect thyroid hormone levels . or cause symptoms of hypothyroidism . Your thyroid hormone levels/ symptoms etc seem entirely consistent with autoimmune thyroid disease , which commonly starts / worsens post partum. Your symptoms are explained by your dose still being a bit too low , hence the TSH being 2.5 , ideally you're aiming for more like 1 , and some people need it a bit less than that.
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
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use these to support your request to trial a small dose increase :
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HELP WITH BLOOD TEST RESULTS
Help please !!!!!!!!!!
Blood Test Results-Confused!
Here are my full blood test results - i'm hypothyroid please help me interpret - 
Thyroid blood test results
