Hi despite having symptoms of feeling cold, pins and needles, hair loss, tiredness, bone pain (offered painkillers), depression (offered antidepressants), constipation (offered laxatives) and heavy periods (offered the Coil and tranexamic acid) my endo has said symptoms are unexplained and so does my GP so I don't know what they are. As well as being offered these medications I also supplement 800iu vitamin D (since 2013) and 1x ferrous fumarate (since 2013 as well) Below results done a month ago. Thanks
Thyroid Peroxidase antibodies 278.5 IU/mL (<34)
Thyroglobulin antibodies 358.3 IU/mL (<115)
Ferritin 49 ug/L (30 - 400)
MCV 77.5 fL (80 - 100)
MCHC 395 (310 - 350)
MCH 28.2 (28 - 32)
RBC count 4.46 (3.80 - 5.80)
WBC count 6.14 (4.00 - 11.00)
Haemoglobin estimation 117 (115 - 150)
Haematocrit 0.390 (0.370 - 0.470)
Platelet count 251 (150 - 400)
Iron 9.2 umol/L (6.0 - 26.0)
Transferrin saturation 14 % (10 - 30)
Folate 2.2 ug/L (2.5 - 19.5)
Vitamin B12 193 pg/L (190 - 900)
Vitamin D (25 OH) 54.2 (50 - 75 suboptimal)
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Opa87
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Hi Opa. I'm simply stunned, how on earth can your endo(prat) reckon your symptoms cannot be explained. Let me guess, based entirely on your TSH blood test results? What was your latest TSH score out of interest?
I'm assuming the endo carried out a complete thyroid panel (i.e. fT3, fT4, T4 in addition to TSH & thyroid antibodies)? If not that's what you need.
But regardless from your symptoms you're severly hypothyroid. If you're taking thyroid hormones, they're right now not sufficient. What are you taking, just a low does of T4?
Your thyroid antibodies (which are high) indicate there's current auto immune activity causing inflammation of the thyroid i.e. active thyroiditis (most likely Hashimoto's).
Your bloods indicate you're low in iron (despite your supplementation, it's either not enough and/or you're struggling to absorb it properly), low in folate, and low in Vitamin B12. They all need improving a.s.a.p. It's no wonder you're feeling so rough!
Do you have full thryoid blood test results you are able to post? And can you indicate what you're currently taking in the way of thryoid hormones? All the best.
Taking 50mcg levothyroxine, diagnosed 5 years ago.
Serum TSH 7.10 (0.2 - 4.2 mIU/L)
Serum free T4 12.9 (12.0 - 22.0 pmol/L)
Serum free T3 2.6 (3.1 - 6.8 pmol/L)
The endo reduced my dose to 50mcg before the above results came back. I was on 150mcg levothyroxine and 10mcg T3 and felt much better on this. The endo reduced it because of the TSH being below range.
Agreed with the posts below. You need a new endo, that actually knows what they're doing! Your TSH score is completely irrelevant from the moment you first started taking thryoid hormones. It's how you feel (better or not) together with the T4, fT4 & fT3 results that counts.
It's daft when you were doing so much better, that your medication was so drastically cut. Your fT4 & fT4 were more or less spot-on, and the endo should have been pretty happy with your latest bloods. It sounds like you were on roughly the right amount of medication before it was recently dropped. Was your T4 measured at the same time?
Obviously your call on what to best do regarding thryoid hormones (but you'd clearly be feeling better if your hypothyroidism was brought back under control).
As for general well being, please do look at improving your vitamin/mineral levels. I'd agree with Greenteas, your Vitamin D supplementation could do with being signficantly improved (Vit D is so important for correct thryoid functioning), I would have thought 2 to 3,000iu daily would be more appropriate (especially as we head towards the winter months).
Your Vitamin B12 needs a good boast. I wouldn't have thought Pernicious anaemia a worry. It's low (not extremely low!) but it definitely needs raising signficantly and the sooner the better. A daily high dose of a good quality sub-lingual spray would help you here. I'd be generous with the supplementation as this is one Vitamin that you can't really overdose on (it's water based, too much & you simply excrete it from your body).
Your iron definitely also needs a good boost, I wonder whether you're struggling to absorb your currrent iron supplementation. You may want to consider taking a more readily absorbable form, such as a good liquid iron forumula; and taking this together with high dose Vitamin C (buffered to be gentle on stomach) would further aid iron uptake. And finally, personally I wouldn't wait to improve my folate. I'd take a folate tablet each day (1000mcg - Solgar do a good one). rather than folic acid (which no doubt the doctors would prescribe!).
You may well also be low in other key vitamins/minerals. It would be well worth checking your stomach acid levels - if low (which is quite common with hypothyroidism), you'll struggle to absorb key nutrients from your food. Stomach acid level can easily be tested using Betaine HCl tablets - just Google 'testing for low stomach acid' and you find out how to do so. If found to be low, you can easily address this by taking a Betaine table with large meals.
Seaside Susie has provided some helpful advice regarding trying to tackle the active Hashimoto's attack, via diet changes.
I'd looked at the fT4. I was just curious whether overall T4 (not free) was also measured. Doesn't really matter if not.
But I think that's probably all the advice can give now (unless you have any specific questions). You just need to mull it over, & now draw up a battle plan. And hopefully feel much better again soon
Can't see your thyroid results but you have Hashimotos?
800iu vit D isn't high enough supplement. Perhaps take 2000 for a while. Also ask for active b12 test or a referral as It's so low. Obviously folate is low too.
The endo reduced my dose to 50mcg before the above results came back. I was on 150mcg levothyroxine and 10mcg T3 and felt much better on this. The endo reduced it because of the TSH being below range.
I don't think your Endo reduced your meds because he thought you were overmedicated as clearly you were not. It expect he wanted to take you off T3 and that was the excuse he gave you. By the sounds of it they've all been told to get patients off T3. NHS is trying not to prescribe it anymore because it's costly. He is not correct though as patients already taking T3 and stable should not need to be taken off it. Dump your Endo and find a better one.
There is a Government consultation ongoing at the moment. See documents on the right hand side of this forum if you want to let your views be known about T3. Consultation finishes in October so don't delay.
You need a new endo. That was a ridiculous reduction in medication. Your previous results are similar to mine, but my tsh is 0.01. My endo knows that I'm well at that level so I'm still taking t3 with t4 meds.
That's not good to make you drop meds so drastically.
Has anyone told you that your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it? The antibody attacks cause fluctuations in symptoms and test results.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Read and learn as much as you can to help yourself, because it's obvious from your other post that your doctors aren't helping you much.
For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
MCV 77.5 fL (80 - 100)
MCHC 395 (310 - 350)
MCH 28.2 (28 - 32)
These suggest iron deficiency anaemia. Has this been mentioned? Have these results been like this since you started your ferrous fumarate back in 2013? If so then you aren't being treated correctly with just 1 x ferrous fumarate daily.
NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines) cks.nice.org.uk/anaemia-iro...
How should I treat iron deficiency anaemia?
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
You should tell your GP that you believe you have iron deficiency anaemia, if not already diagnosed, and ask for the appropriate treatment. If already diagnosed, ask why you've only been given 1 x ferrous fumarate and why he has ignored these results for so long.
Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
**
Folate 2.2 ug/L (2.5 - 19.5)
Vitamin B12 193 pg/L (190 - 900)
You need to ask your GP why these results have been ignored.
You are folate deficient with extremely low B12. Do you have any signs of B12 deficiency b12deficiency.info/signs-an... should post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc and you should quote your folate, B12, ferritin results, any iron deficiency information, any signs of B12 deficiency you may be experiencing. You may need testing for Pernicious Anaemia and you may need B12 injections.
You should discuss the PA forum's advice with your GP. If you are prescribed folic acid DO NOT start taking it until any further investigations regarding your B12 have been done.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Folate should be at least half way through it's range.
**
Vitamin D (25 OH) 54.2 (50 - 75 suboptimal) 800iu vitamin D (since 2013)
4 years of supplementing with 800iu D3 and you're still suboptimal. You might want to mention that to your GP. However, he is prescribing the amount he is allowed to prescribe with that level so you'd be better off sorting this out yourself.
The recommended level, according to the Vit D Council, is 100-150nmol/L.
When you've reached the recommended level you'll need a maintenance dose which may be 2000iu daily, or you could take 5000iu alternate days, or it may be less, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Are you taking any of the other medications that you've been offered?
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Neither your endo nor your GP appear to know how to treat hypothyroidism. Is there another GP you can see in your practice? If not can you change to another practice? I would also ditch the endo, he hasn't a clue what he's doing.
Good luck with getting a better GP and endo. They seem quite crap!
Is it possible you are coeliac as well? Anaemia and vit deficiencies, depression and tiredness and constipation can also be coeliac symptoms. It's a common myth that you have to be losing weight or not overweight or have diarrhoea to have coeliac and it's often found in thyroid patients.
Have you been tested for coeliac and were you eating 4 slices of bread or equivalent for six weeks before the test? And did they test you for Iga deficiency if initial test was negative.
Even if not coeliac you may find your symptoms and vit absorption improves on a gluten free diet.
Take a look at coeliac.org.uk/coeliac-dise... and then ask for your GP to test you if you want. its a good point by another poster that a diagnosis isn't everything because you may still feel better going gluten free even if you aren't coeliac. In which case the website is just good for how to avoid gluten. There are some benefits to diagnosis though - I want to find out whether I have it partly to help me decide whether to commit 100% to a life without gluten and also as it can run in families, I want to see whether my daughter needs to get tested before she shows any symptoms.
As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.
Only 5% are diagnosed as coeliac but over 80% feel significantly better on gluten free diet. Either as gluten intolerant (not test available) or due to leaky gut
In my view no point testing for coeliac, other than possibly to wave the idea under GP's nose
Blood test is notoriously unreliable and even endoscopy not 100%. But they only sneer when test comes back negative (only 5% with Hashimoto's are coeliac)
the vast majority with Hashimoto's need to be strictly gluten free - see links to Thyroid Pharmacist above
Just that most endos seem to have no idea about that either
Hence 65K members on here and growing at rapidly increasing rate since the false economy of withdrawing T3 (and not telling patients the truth why they are having it stopped )
Email Louise at Thyroid UK for list of recommended thyroid specialists
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