New to this site and asking for advice please

I was diagnosed with hypothyroidism in 2008, by TSH level only,after at least two years of symptoms, illness and two sinus ops,that my then GP put down to my age,the menopause,my work etc. A truly miserable and debilitating time. I started on 25mcg Levo which increased to 50, then after about five years to 75 and then 100. Then the inevitable happened,TSH became 0.35 so was told to reduce levels. Now after one and a half years TSH is 1.91 I have gained 10kg, terrible skin problems,which are made worse if the Levo is increased,no energy etc etc. all very difficult when you still work full time aged 60.

I made a decision recently to reclaim my health,so went to see Dr P. The meds he suggested for me,Nutri Adrenal and Nutri Thyroid are not really helping. The Nutri Thyroid made me feel ill the other day, as if my throat was closing over. I have discussed all with my GP and persuaded her to do bloods as suggested on here. Have tried before to get T3 tested,but lab returned it saying no need as TSH level within range! Outrageous that they ignore the GP's request. This time they were sent to a different hospital,and were done.....all except the antibodies! Not helpful when I am certain I have Hashi's as have been intolerant to wheat and gluten for years,plus other issues like IBS/ diverticulitis,repeated shingles, acne,carpal tunnel,joint pain if I eat the wrong things,weight gain and no energy,all when supposedly taking miracle meds Levo!!

Bloods were as follows:-

Serum cortisol 474 nmol/L. (150.00-720.00nmol/L)

Serum free T3. 4.0 pmol/L. (2.80-7.10 pmol/L)

Serum free T4. 19.1 pmol/L. (9.00-26.00pmol/L)

SerumTSH level 1.91 mu/L. (0.27-4.20mu/L)

Vit D. 69nmol/L. (>50.00nmol/L

B12. 513ng/L. (191.00-663.00ng/L

Folate. 10.0 ug/L. (4.60-18.70ug/L)

Ferritin. 82ug/L. (15.00-350.00ugL)

Calcium. 2.24. (2.10-2 .58mmol/L)

Albumin. 47g/L. (35.00-50.00g/L)

Magnesium. 0.86 mmol/L (0.70-1.00mmol/L

Any comments on the above bloods will be gratefully received. I already know I need the antibody tests.

I was referred to a Dermatologist last year who did a biopsy which came back as "skin problems related to auto immune disease" .,and he wrote to my GP suggesting I change meds ( on my advice to him,which he agreed with) My GP said Liiothyrionine very expensive,and would have to check with her practise over this. Hence my visit to Dr P. GP now agreeing to refer me to an Endo for diagnosis,and I have asked for "sensitive" ones names on this forum,thank you. Will see Dr B in June now,but feel totally disillusioned my health will ever get on an even keel again.

Thanks for reading.

10 Replies

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  • Welcome to the world of thyroid where we have to educate ourselves rather than trust our GPs.

    I found that Nutri Adrenal make me feel quite ill and had to stop taking it, others on here have found the same.

    Are you able to afford tests done privately? Check out the main page thyroiduk.org and you'll find details under Testing.

    You may want to check that Dr B will help as I seem to remember that some members found that NHS guidelines were rigidly adhered to by this Doctor.

    Vit D is low so worth supplementing.

  • Thanks. I have been supplementing Vit D for years!

  • Welcome to the forum, FR23.

    TSH 1.91 is a little high. The goal of Levothyroxine is to restore euthyroid status which for most will be just above or below 1.0 with FT4 in the top 75% of range (> 21 in your range) and FT3 in the top third of range (>5.6 in your range).

    Read Dr. Toft's comments in Treatment Options thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if a full copy of the Pulse article will be useful to show your GP.

    An increase in Levothyroxine should help if your GP is unable to prescribe Liothyronine (T3).

    How much vitD are you supplementing? 75-200 is considered optimal and most people are happy with vitD around 1.00.

    B12 >500 is the minimal most find acceptable. Supplement 1,000mcg methylcobalamin sublingual lozenges, spray or patches and take a B Complex to keep the other B vitamins balanced and to boost your folate.

    Ferritin is optimal half way through range so supplement iron and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

    You can order private thyroid antibody tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    Dr.B is no longer on TUK's recommended endos list as members have complained that she has become fixated with keeping TSH within range.

  • Just wanted to say that I saw Dr B on Saturday,and she could not have been nicer nor kinder and immediately suggested I try NDT, WP Thyroid. I would definitely recommend she is reinstated to the list of " good" Endo 's on this site. The only problem I am now having is sourcing the damn WP Thyroid meds!

  • Fr23, I'm glad you had a good experience. Maybe wait and see how she handles the thorny issue of TSH when you're taking WP. If you think the same then email louise.warvill@thyroiduk.org.uk with your feedback.

    You can order WP from one of the pharmacies in this link thyroiduk.org.uk/tuk/treatm... or your pharmacist can order from one of the wholesale medicines importers in the link.

  • Have PMed you

  • Fr23,

    Others have answered your queries already.

    I just wanted to say that from reading your post, it might be sensible to assume that you have Hashimotos.

    Rather than wait for a test to prove the existence of antibodies I would start treating as if they were there right away by trying to reduce inflammation by healing and nourishing your gut and leading a healthy life style.

    I too tried the glandulars and they didn't agree with me. It is disappointing when you believe in something but now you just need to believe that you will get better another way.

    flower007

  • Thanks for your help. If you too have tried the glandulars and they didn't suit you can I ask what are you now doing re treatment?

  • Concentrating on healing my gut which has plagued me with troubles most of my life. I am seeing a nutritionist, taking tailored supplements and having various testing.

    A good read is The Root Cause by Izabella Wenzt who explains exactly how important the gut is with regard to overall health.

    My plan is to eventually add T3 to my T4 once I feel my gut is working better and I can tolerate the additional meds.

    flower007,

  • I would say you're just not converting - which is common with Hashi's people. I think T3 would help. Keeping on increasing the T4 is not going to help, because it will just slosh around in the blood and cause trouble.

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