ME or Hypothyroid

[Diva1969]

I have now been referred to a clinic for ME sufferers as my regular thyroid tests are ok with 125 mcg of Thyroxine. My dosage five years ago was 175mg. I have not had any further tests for my Thyroid and really don't want to be just stuck with the diagnosis of ME. It is very frustrating.

[Angel_of_the_North]

What are your results for TSH, FT4 and FT3? I bet you are either not converting T4 to T3 efficiently or are just under-dosed. Do you also have results for Ferritin, B12, folate and D3 - they all need to be at optimum levels, no just in range. I think these clinics are often a scam - they just try to "hypnotise" you into believing that you are fine - and being referred without recent thyroid tests is, I think, against guidelines, as ME is a diagnosis of exclusion (ie you don't have anything else). If your GP won't do the tests, get them done privately through Blue Horizon.

[vivbr]

I Know nothing about ME except that Gluten and lactose free diet is an essential for wellness. It's really important for hypothyroid problème also.

[Hidden]

I have the suspicion it's what my GP is going to diagnose. He is concerned why my energy isn't picking up. All my bloods are clear other than a rising TSH. He has put me on 75mg as of this week and in 2 weeks i I feel no better he wants to see me. I have decided to wait 6 weeks then test my thyroid again because I don't want to be given a CFS diagnosis on top of this.

It depends on what your thyroid figures are, do you have them? because some doctors think once TSH is within the range everything is fine. My TSH has crept up to 5.7 again and I feel terrible yet it's only just outside the NHS range.

I'd post your results here for others to give you advice. It's what I have done and it's helped a lot.

Good luck.

Julie

[galathea in reply to Hidden]

Julie, 5.7 isn't creeping up, its galloping.

I felt really really dreadful when my tsh rose to 0.1 from 0.02 so thats a 5 fold increase.... So much so that the miserable endo agrred to put me back on t3 ( which he didnt belive in. Lol). As i was so ill. I cant imagine how you must feel at 5.7. The doctor Toft booklet advises that your tsh should be at 1 or under to feel well...

Dt toft is a retured endocrinologist who used to be head of the british thyroid association..... His book is available from amazon.... amazon.co.uk/Thyroid-Disord...

Does your doc profess to understand better than an endocrinologist?

X

[Hidden in reply to galathea]

My TSH to begin with was 9.28 but we got it down to 2.6 with 50mg of levo but then it shot back up to the 5.7. I am now on 75mg as of yesterday so fingers crossed that will help bring it down.

My main symptom is chronic fatigue, it's led to agoraphobia as i feel so weak and tired all of the time. Being a mum that's been tough for a year now. I also have energy crashes like you'd have with ME where if I go out to the park, or a couple of shops, or even have visitors over I feel so weak and poorly for a couple of days and have to rest. It's horrible. My GP doesn't seem to think that my thyroid would do that at the levels I have, nor does my friend as she said they don't even treat a thyroid until over 10 and my frees aren't even that bad (FT4 is currently at 17 but was as low as 14 when TSH was higher). Hence why my GP wants to constantly do more tests, it's so frustrating and I just want to be left alone and accept it's my thyroid. On top I have brain fog, anxiety, agoraphobia... it's tough. Mentally I feel it's really effected me, I feel so unreal and anxious most days, it's horrible as it spikes my anxiety more making me worry I am mentally ill or something. This last year has been so horrible.

Thank you for the link.

Julie

[Hidden in reply to galathea]

PS I have just bought that book. Thank you.

[Scazzoh]

Why has your dose of levo dropped by 50 over the last five years? You should have routine thyroid function tests annually and six weeks after a dose change. I have spent the best part of 30 years with a diagnosis of M.E/PVFS/CFS, whatever you want to call it. I was diagnosed with an underactive thyroid in 2002 but did not receive any treatment until 2010, when I felt marginally better on Levo. It is only since taking NDT over the last few months that I realise I never had M.E. in the first place. Once you've been given that diagnosis, it's very hard persuading doctors that anything else is wrong.

[SeasideSusie Remembering]

Diva1969 Having read your profile, it's my guess you are undermedicated.

If you get an appointment come through for the ME clinic, delay it for now and treat yourself to this fingerprick blood test from Blue Horizon

bluehorizonmedicals.co.uk/T...

It will give a full thyroid picture plus all the important vitamins and minerals. I think your answer lies in the results of that test.

When you have the results (they are back usually within 48 hours of posting your sample), make a new post and members will comment and suggest how to go forward with your GP.

[Diva1969]

Thank you for all the responses to my email.

I changed GP's as mine retired. I have annual thyroid tests now. The GP is sure I have ME. I have my appointment at the CFS/ME clinic tomorrow.

I have fructose Malabsorption which caused dreadful problems with IBS. An appointment with a private nutritionist who made the diagnosis was a miracle after nine years of suffering.

I shall do the blood test anyway.

Thank you again

[humanbean in reply to Diva1969]

I really, really think you should avoid/reject a diagnosis of ME or CFS. Once you get given that you will be left to rot. Every symptom you have will be blamed on the ME/CFS and getting any kind of treatment will be virtually impossible.

If you have under-treated hypothyroidism and/or low levels of nutrients you will feel dreadfully fatigued and will have lots of pain. But these problems can, in many cases, be treated with adequate thyroid meds of a type that suit you, and supplements to help improve nutrient levels.

If you can afford to get tested privately, it can be done with a finger-prick test that you do at home, then the sample is sent back through the post to the lab. Results are sent to you via email. Once you have your results you can post them on the forum here in a new post and ask for feedback.

Some links on the subject :

bluehorizonmedicals.co.uk/T...

bluehorizonmedicals.co.uk/W...

thyroiduk.org.uk/tuk/testin...

[humanbean in reply to humanbean]

I forgot to mention how to take the test ...

Set a day and time to do the test - either Monday, Tuesday or Wednesday, no later than 9am, but preferably around 8am.

24 hours before you do the test take your Levo for the day. It doesn't matter if it isn't when you usually take it. Drink plenty to reduce the chance of dehydration the next day when you need to get your blood sample.

Stop eating and drinking (apart from water) about 10pm the night before.

Take your levo on the day of the test after you have produced your blood sample. And don't eat or drink (apart from water) until after the test.

Produce your blood sample in the morning, and package it up ready to post.

Take it to the post office promptly. It should be posted with "Guaranteed Next Day delivery by 1pm".

All these shenanigans are intended to get the sample to the lab when a) someone will be there to take delivery, b) the lab will be open, and c) there will be staff to do the testing.

The timing of taking levo, and eating and drinking, is to try and get a realistic result with the highest TSH and the lowest Free T4 possible.

[janveron1]

Are Me and CFS real illnesses with definite symptoms and tests with clear results? Or are they a place to send patients whose doctors are unable to treat appropriately?

Just a thought! From a nasty, stroppy old cynic!!

Janveron

[Diva1969]

I kept my appointment with the CFS/ME clinic and was glad I did.

There are many reasons to support why I have CFS. Chronic Fatigue could be a symptom of my under active thyroid though it could be a combination of post operative infections followed by severe depression after I had to leave work because I was ill for so long.

I understand now why? I need to know what I can do. I have been referred for more thyroid tests and to occupational health.

If it was just my Thyroid why do I have very good days that come out of the blue? The answer is no one knows exactly, hence the controversy around Chronic Fatigue

So I am hoping to learn how to manage my condition.