25 years on levothyroxine and it no longer seems to be working for me.

[Elisabeth41]

I am new here and hoping desperately that someone can help. I was on 125mcg of levothyroxine for approximately 25 years then at my annual blood test my GP rang to say that he was reducing my dose as my TSH level had dropped to 0.025. I have no idea what the level was prior to this as I had always only been informed that previous results were 'normal'. He immediately cut my dose down to 75mcg. Since that happened I have felt really unwell with joint and muscular pains, struggling to get warm,, cramps in my hands and legs (particularly during the night) carpel tunnel in both wrists. I struggle at times to remember words which usually happens mid sentence however this also happened on the higher dose with my memory and also the fact that I never at any stage lost any weight on levothyroxine. Indeed even on the higher dose I felt I was just 'getting by'. Having recently moved I changed my GP she ran a series of tests including the TFT various vitamin tests and she informed me they had all come back normal. I asked to be referred to an endocrinologist and I attended an appointment in May this year. The endocrinologist report came back with her stating my TFT was normal with TSH 3.7 mU/I

T4 12.6

T3 3.9

prolactin (91mU/L0

cortisol (333 nmol/L)

low oestradiol (83 pmol/L)

and raised gonadotrophin (FSH 81U/L, LH 30.6 U/L .The report stated that this was appropriate for menopausal age and that TPO antibodies were negative. It also stated that a short synacthen test would be arranged.

I had the Synacthen test 13-07-17. Her report stated that the test showed an adequate response with basel cortisol of 161 nmol/I rising to 779 nmoI/I in 30 minutes.

This test was done approx. 4pm and less than 12 hours later I became extremely unwell and very scared. I was woken up by a violent headache, shaking sickness and unbelievable dizziness. I felt I was being dragged to somewhere I wouldn't come back from. My husband rang 111 to ask for advice, he explained about the test I had earlier and they sent the paramedics. Nothing like this has ever happened to me before and the paramedics who were brilliant noted it down as on going thyroid problems and vertigo.

I am due to see the endocrinologist in Sept. and in the meantime she has written to my GP and decided to put my levothyroxine up to 100mcg to get my TSH to around 2.5 mU/I

She has also stated to my GP and myself that an appointment with Rheumatology might be the best option and that chronic fatigue syndrome should be considered.

She also stated to my GP that I had asked if I might benefit from any other thyroid medication. She states in her letter that no evidence exists of T3 being of any use whatsoever. She also told me that she had never heard of Natural desiccated Thyroid Hormone.

I realise I have rambled on and I apologise in advance! I just cannot help but feel that all my symptoms are down to my under active thyroid that is not being treated correctly.

Any advice would be really appreciated Thanks to all

[Clutter]

Welcome to the forum, Elisabeth41.

TSH 0.025 was suppressed but that alone did not mean you were over medicated. Your GP should have checked FT4 and FT3 and if they were within range you were not over medicated. Dose adjustments are usually in 25mcg increments so 50mcg reduction was too drastic.

I think Levothyroxine would still be working if you weren't undermedicated. You were undermedicated on 75mcg to have TSH 3.76. Increasing dose to 100mcg should be helpful.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

When you are optimally dosed you may not need the rheumatology and CFS appointments. Ask your GP to check ferritin, vitamin D, B12 and folate which are commonly low/deficient in hypothyroid patients. Symptoms of deficiency can be fatigue, musculoskeletal pain and low mood similar to hypothyroid symptoms.

T3 can be helpful if your FT3 is low. You should wait and see how you do on the 100mcg Levothyroxine before trialling T3. If your endo isn't prepared to recommend it to your GP you won't get it on NHS and will need a private prescription or buy online and self medicate. Your endo will probably have heard of Armour even if she is not familiar with the term natural dessicated thyroid which is not licensed for UK use. Most members using NDT have private prescriptions or buy online and self medicate.

[Elisabeth41 in reply to Clutter]

Thank you for your speedy reply. I will try to get a copy of my vitamin and mineral results from my GP this week. I have emailed Louise for a copy of the Pulse article you mentioned however I am not sure if I was meant to include my address or whether I would be receiving it via email? Once again many thanks for all your advice.

[Clutter in reply to Elisabeth41]

Elisabeth1,

It will be emailed to you.

[SilverAvocado]

Elisabeth41, this story makes me so angry. A similar thing happened to a friend of mine. Had been on Levo for 25 years, then got a big decrease and has had all kinds of health problems since. It's gone on for 4 years, with all kinds of doctors intervening, including dropping the dose even further. His most recent TSH was 8, and I'm hoping he's on the path to getting his dose back into a good range.

This comes up on the forum quite frequently, too. Doctors are so happy to reduce doses

[Elisabeth41]

Hiya Silver Advocado , I'm sorry to hear your friend is struggling too. After being on the same dose of levo for over 25 years it came as a total surprise that things suddenly changed and my dose dropped immediately to 75mcg from 125mcg. I did not feel any different before the drop in medication but have certainly felt unwell with many problems since. I feel that my endo doesn't seem to be 'connecting all the dots' and is really eager to stick the CFS label on me. Maybe I will discover I am wrong but I just think things would be sorted if I was on the right treatment for my thyroid.

I have called at my GPs today to order copies of my blood tests though they didn't seem to eager about that! I feel very silly to have just accepted in the past that having been told my tests were normal I did not enquire any further. I am hoping to learn something from the results when I get them . I have read that in order for the levo to work at its best that my vitamin and mineral levels all need to be at their optimum level not just adequate.

I am happy to have found this forum and to discover ways to maybe help myself when I just felt so helpless and wondering what on earth can I do now!

My best wishes to your friend , I hope he soon starts to feel better.