What would you do?

My first post here, although I have been reading and learning for some time. My husband has been feeling unwell for several years. Severe fatigue has been the main symptom, along with bad headaches. 18 months ago he started to suffer from tingling in his hands, plus numbness. In time this progressed on to his feet and up his legs and he now has some pain in his heels when walking.

After a change of GP they discovered IGM paraprotein (at a low level) and also 'anti mag' although no nerve damage/neuropathy. We have long wondered about thyroid issues as there is a strong history in his family of hypothyroidism (3 generations back) and so some relevant bloods have been taken, but it has been the usual story 'TSH is normal so no problem". The results are as follows:

Serum TSH level1.78 mu/L0.27 - 4.2mu/L

Thyroid peroxidase 81 IU/ml range 0 - 34

Free T3 3.9 pmol/l Range 4.0 - 6.8

Rheumatoid factor 21.8 IU/ml range 0 - 14

Vitamin B12 326 pg/ml range 197 - 771

We are wondering about going privately and having the full range of bloods done - what would you do? The TPO and free T3 suggest to us there may be an issue but according to the neurologist we saw today (for the tingling hands and feet) he is "not hypothyroid". Is he right? Feeling confused...

26 Replies

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  • Kruzgal Thyroid Peroxidase antibodies at 81 are over range so positive for autoimmune thyroid disease aka Hashimoto's. FT3 at 3.9 is under range. TSH is in a fairly good place. But where is FT4?

    If FT4 is low, along with low FT3 and low TSH it points possibly to secondary/central hypothyroidism where the problem lies with the pituitary or hypothalamus rather than the thyroid.

    pituitarydisorder.net/centr...

    What you really need is a doctor willing to consider central/secondary hypothyroidism but as it's not so common as primary hypothyroidism you might struggle so you will need to research and present some evidence.

    As far as Hashimoto's is concerned, Dr Anthony Toft, leading endocrinologist and past president of The British Thyroid Association, wrote in Pulse magazine that where antibodies are present then Levothyroxine should be started to 'nip things in the bud'. You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk to show your GP.

    So you actually have two ways of trying to persuade your GP to consider treatment.

    Hashi's is where antibodies attack the thyroid and gradually destroy it. Hashi's isn't treated, it's the resulting Hypothyroidism that is. Adopting a strict gluten free diet can help reduce antibodies, as can supplementing with selenium L-selenomethionine 200mcg daily and keeping TSH suppressed. Doctors don't generally know or acknowledge this.

    **

    B12 below 500 can cause neurological problems, the recommended level is very top of the range, even 900-1000. It's likely that your husband's level is causing the tingling. Is there a Folate result? If Folate is low there's a possibility of Folate/B12 deficiency so it's best to get that tested before supplementing for the low B12.

    You could have full tests done but all that's missing from the thyroid tests is FT4, you don't really need Thyroglobulin antibodies because the high TPO antibodies have confirmed Hashi's.

    You have B12, you need Folate, Ferritin and Vit D.

    You can get a full set of tests, details on ThyroidUK's main website here thyroiduk.org.uk/tuk/testin...

    Check out Blue Horizon Thyroid plus Eleven and Medichecks Thyroid Check Ultra Vit, they're both the same.

  • Thanks for taking the time to respond. It is extremely helpful. He has not had T4 tested (it was a battle to get T3 done) so we obviously need to do this. I have just checked his results and they are as follows;

    serum folate 4.3 ng/ml. Range 3.9 - 20.00

    Ferritin 148 ug/L range 30 - 400

    No results for Vit D.

    Other bloods slightly out of range are:

    Albumin (electrophoresis) 67.0 % range 51.0 - 65.6

    Lactate dehydrogenase 228 IU/L range 135 - 225

    These could relate more to the IGM paraprotein, which we believe is a separate issue (and at a low level so not causing specific problems, although it is being monitored regularly).

    We are considering going privately as we don't hold out any hope with our GP. It is really just a question of whether it is worth it i.e. Do the tests indicate there is something wrong? We feel like we are going mad as the consultant we saw today dismissed the TPO result completely, as the TSH is normal.

  • Kruzgal Folate is too low, it should be at least half way through it's range. You need to take the Folate and B12 results over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice

    healthunlocked.com/pasoc

    Ferritin is also low, that also needs to be half way through it's range.

    The other tests I don't know about but you can check them here by putting them in the search box labtestsonline.org.uk/under...

    Unfortunately, many doctors dismiss positive antibodies but as I have explained you have two issues that are a cause for concern - Hashimoto's and the possibility of central/secondary hypothyroidism. I have given you a link for central/secondary hypothyroidism, here are some links about hypo and Hashi's:

    thyroiduk.org.uk/tuk/about_...

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    thyroiduk.org.uk/tuk/about_...

    Many of us have had to research and learn as much as possible to help ourselves in trying to get well, unfortunately poor treatment of thyroid disease is very common.

    If you email Louise for the Pulse article by Dr Toft, also ask her for the list of thyroid friendly endos. Ask on the forum for feedback on any you are thinking of consulting with, replies will have to be by private message from members to you.

  • Thank you again for your response. I already have the list of endos from Louise so we will look at that today. We may have one last try for a referral to an endo on the NHS but if unsuccessful we will have no choice but to go privately.

    We have long suspected Hashimoto's but because of the normal TSH the high TPO has been ignored. From this forum I know this is a common problem.

    I will head over to the pernicious anaemia site for advice on some of the bloods and symptoms.

    The neurologist we saw yesterday was treating the symptoms but not attempting to diagnose the cause. He wasn't interested in any sort of dialogue - there was no nerve damage found during nerve conduction studies so that was it.

    My husband has carpal tunnel and plantar fasciitis (diagnosed yesterday) both of which appeared at almost the same time. I now learn they are symptoms of hypothyroidism and yet according to the neurologist my husband is "not hypothyroid". Unbelievable.

    It would be easy to give up but we must keep up the fight!

  • I'm not sure how brave you are, but I went gung ho, & self-medicated for secondary hypothyroid symptoms that my endocrinologists refused to acknowledge. They don't even look at important nutritional anomalies.

    It was a financial choice of tests or meds, so I chose the latter. Taking NDT miraculously cured things I didn't know were related to my thyroid. I've felt well on T3, too, & now take a combination.

  • Hi! Read up on plantar fasciitis too, this causes shooting pains up the heel and a tightness around the calf, a hypothyroid symptom.

  • The neurologist diagnosed this today and said he will need orthotics in his shoes. No mention that it is a symptom of hypothyroidism!

  • He also diagnosed carpal tunnel and migraine headaches....

  • Likely have hashimotos with those positive antibodies, that free t3 is way too low and is actually below range albeit only just. Find a doctor who will listen and research.

  • low TSH low free t3 is highly indicative of CENTRAL hypothyroid which is different to usual primary hypothyroid

    low b12 often accompanies hypothyroid and could be the cause of tingling

    pernicous aneamia is also auto immune and often masks as hypothyroid

    thyroid antibodies need doing

    freet4

    ferritin

    folate

    b12

    vit d3

  • Thank you for taking the time to respond. Some of the bloods suggested are listed above. We will certainly pursue the possibility of central hypothyroid - just need to find an endo that knows something about it!

  • plantar fascities and carpal tunnel both go hand in hand with hypothyroid

    if idiot gp wont bother to look up central hypothyroid order NDT and self treat its better than levothyroxine for many in this situation IMHE

  • I was annoyed to read that plantar fasciitis and carpal tunnel are symptoms of hypothyroid and yet the neurologist stated that my husband is "not hypothyroid". We will have one last try for an NHS referral to an endo and if unsuccessful will go privately.

  • I saw several endocrinologists who ignored my extensive list of hypothyroid symptoms from The Pituitary Foundation & Thyroid UK. They only seem interested in diabetes.

  • Suggest he gets full panel of tests first before making an appointment

    With Hashimotos the gut & food intolerances are often linked too - especially gluten

    Gluten & leaky gut lead to low nutrient levels too

  • It was interesting because last year he did the Atkins diet for a few months and cut out carbs and he felt much better. We put it down to losing a bit of weight/eating healthier but are now wondering if he have hit on something that would help. We don't want to go gluten free again until he has a diagnosis.

  • When did your husband last have a full, general panel of bloods done? If that isn't all that recent, surely that's the foundation of all puzzle solving - discounting the simple stuff.

  • He had a lot of bloods taken at the start of this year, but not T4 and not vitamin D. The other results posted above are from the tests taken this year in January/February. I think there are issues with his bloods, it's just finding a Dr that understands them and uses them in conjunction with his symptoms.

  • I am sorry that a so called endo dismissed your husbands symptoms but can assure you Central hypo is a very real possibility and CT and PF are most definitely hypo symptoms

    my husband and daughter and 3 grandaughters all have Central Hypo and husband went through the frozen shoulder CT and PF scenarios

    He is fine on NDT unless you can see a really good endo dont waste your money save it for NDT

  • It was a neurologist who dismissed the symptoms/bloods not an endo. My husband hasn't ever been seen by an endo because his TSH is normal so the medical profession believe there is nothing wrong. We will have one last try at getting to see an endo on the NHS. I would prefer not to self medicate but I guess we may have to. Is NDT expensive? We are very new to all this.

  • These TSH obsessed Doctors refuse to face the issue of Central hypothyroid they believe its rare and r too lazy to read up on its effects

  • Firstly theres only very very few good endosc and only 2 i know who would heartily endorse NDT

    my lot all have to self medicate with NDT bcos whilst endo recomends NDT the GPs wont prescribe it ...nhs and insurance issues block them

    and no its not horrendously expensive thankfully pm me for details when your ready

  • If you look at

    The Thyroid Pharmacist - Isabella Wentz

    Amy Myers

    Chris Kresser

    All have masses of info on diet/gluten & leaky gut and its connection to Hashimotos & Graves

    Gluten intolerance does not necessarily mean you have any obvious gut issues at all

  • I agree with others that its very doubtful you will find an Endo to support you. I've had cancer and my thyroid was removed by the Endo who is still my main consultant. But still once it was established I didn't have the completely straightforward response to hormone replacement I was just sent home saying I had to cope alone. I was determined that because the surgery had put me into this position (mostly bed bound), I wouldn't be fobbed off, but really there's just no knowledge of non-standard cases.

    Often you will have to wait till TSH raises to 4, or even 10 for a diagnosis, and central hypothyroidism is dismissed with 'oh, that's rare, so we never consider it'.

    Oh my goodness, don't I sound depressing! I just wanted to prepare you for the situation. You probably won't find help, but I think it is still worth looking, you will learn a lot in the process at least :)

  • I just thought I would update my thread, started a while ago, as you were all so helpful. Today we saw an NHS Endo for the first time. The appointment went pretty much as we expected - "you are not hypothyroid", "TPO result is marginal", "we look at blood results not symptoms", "Free T3 is only just out of range so not an issue", etc. At least we were prepared so weren't surprised. My husband had bloods done again and we should also get Free T4 and Vitamin D as well, which is a start. He is also having ultrasound of his thyroid in about 6 weeks with a repeat of the bloods at the same time, then a follow up to discuss. Not holding out hope of any treatment as according to them there is nothing wrong.

  • I wrote this update yesterday but for some reason the thread didn't appear ......... trying again!

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