Thyroid UK
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Help for upcoming Dr's appointment

Hi all, I was diagnosed hypothyroid April 2012 and put on an increasing dose of levothyroxin. After six months of extremely painful joints, being tested for rheumatoid arthritis and being put on pain meds and having my concerns that the Levo was responsible totally dismissed, finally a Dr listened and I took a Levo break and the pain instantly disappeared. I suggested ndt and my Dr consulted an endocrinologist who said as my TSH was only 7.65 to just monitor so I've been unmedicated since. I've tried Levo and a branded thyroxin more recently when my levels had risen with the same results and eventually when my symptoms became worse and my TSH rose to 15.17 I was refered to the endocrinologist. He's written a fantastic letter stating I'm intolerant to generic and branded thyroxin and as my TSH has risen again to 33. 3 and my peroxidase antibodies are strongly positive (they were when I was tested in 2013) that I need to start hormone treatment T3 or Ndt but he did warn me that my local health authority have advised gp's not to prescribe so I may have a battle on my hands or a hefty private prescription bill, which I just can't afford. I have an appointment tomorrow to see my Dr and I'm nervous, my hope is to come away with a prescription, are there any other options if I don't? I've heard of people buying the medication from abroad at a much cheaper cost, is that something the dr can support me with by doing regular tests etc? Or any other options anyone can think of, I'm too ill for a battle right now but I could do with going to this appointment armed with any information I can. Thank you in advance, Catherine x

7 Replies
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Hi and Welcome ! Do you have any results for B12 - Folate - Ferritin - VitD ? They all need to be optimal for you to feel well and for thyroid hormones to work well in the body. Looking back I could well have been sensitive to Levo as I felt awful - but once I had improved levels of the afore-mentioned vitamins and minerals things began to improve. Healing the gut is key with Hashimotos and in my book reduces sensitives - which are often an immune response. The immune system is in the gut :-)

Do you have any thyroid results with ranges you could post ? Are you sensitive to anything else ? - it is possible the fillers that are causing the problem. Someone will be along soon with advice about T4 meds that are more pure.

Hopefully your supportive Endo may influence your GP - :-)

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Try asking about Synthyriod. Levo, is the generic of Synthyriod. I hope it helps.

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Hi and thanks for your replies, I'm on iron supplements and have been for a number of years. I don't have any results with ranges I'm afraid, I'm fairly naive when it comes to these matters if I'm honest . I have tried Eltroxin, 25mg every other day with the same results, went along to my dr for something for the pain after a week, I was willing to give it a good go but he told me to stop talking it.

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Likely you were never on enough Levothyroxine and it sharply reveals low vitamins, especially low vitamin D

Ask GP for testing of vitamin D, folate, ferritin and B12, plus coeliac blood test

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

25mcg is too small a dose and often makes symptoms worse. Standard starter dose is 50mcgs and this is increased in 25mcg steps (retesting each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Extremely likely to need significant supplements

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

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

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Getting vitamins sorted, started on Levothyroxine (T4) and increased slowly, then look at adding in small dose of T3

But gluten free diet is often essential too, especially before T3

Very unlikely to get a NDT or just T3 prescribed. You might get referral to a NHS endocrinologist for consideration of T4 plus T3.

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Thanks for all that info slow dragon, I am really clueless and some of the things you've mentioned are light bulb moments with problems I've gone to the Dr with over the last few years and been sent away with another pill for. The endo I went to see is suggesting t3 or Ndt but firstly to try t3, it's that just going to be pointless then? I felt like I was making progress with professionals who knew what they were doing but seems like I need to become an expert lol. I'm off to read those links you've posted and educate myself, can't thank you enough x

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NHS endo can prescribe T3 on NHS.

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CH76,

Ask your GP to trial liquid thyroxine.

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