Diagnosed with ME/CFS today

[Pen1966]

ADVISE PLEASE

Email sent to Endo nurse

Thank you i managed to open results in the end and noticed my T4 is elevated yet again.

I have been having sweats day and night jittery and shaky and very bad muscle and limb

weakness too. Also fatigue beyond belief not sleeping and if i do not alot. Is there any chance

my medication could be dropped down again as feel awful and have been reccommended by Thyroid uk

to ask for parathyroid and thyroid antibodies to be tested is this something that can be arranged?

Alos the British Thyroid Foundation said the antibodies and parathyroid should be tested even though

i have no thyroid.

[annnsandell]

Perhaps a little more information, please. What was your T4 result and did you have other tests? Where are you with menopause? Why has your thyroid been removed and when?

[Pen1966 in reply to annnsandell]

Thyroid removed 31 years ago am 55 finished periods 21 years ago Tsh last week was 2.1 range 0.3 to 5.5T4 was 25 range 10.to 22

Had full blood count and inflammatory markers all ok

[annnsandell in reply to Pen1966]

Without additional information -T4 certainly appears too high, is this a sudden rise? No T3 result. Assuming you are on Levothyroxine. Apparently, as we get older we require less but has TSH changed at all, there might well be something else going on here, hopefully, Endo will respond. Your symptoms could also be due to ME/CFS.

[Pen1966 in reply to annnsandell]

My levels go up snd down test from Medichecks below

Results

[annnsandell in reply to Pen1966]

Hi again Penn1966, Sorry this is beyond my understanding, provided that tests have been taken under the same conditions, time of day, not taken medication that day, I have never known results to go "up and down" with the same medication and no thyroid. T3 test would be useful. I suggest that there is something more complicated going on and hopefully your Endo is on the ball. This might also be leading to the ME/CFS diagonosis.

[humanbean in reply to Pen1966]

I'm puzzled by your TSH in that image of your Medichecks test results. It seems to be too high for the level of Free T4 and Free T3 you have.

If I had your Free T4 and Free T3 I would want to reduce Levo dose until it was around 70% - 80% through range and then would add in T3. Adding T3 can sometimes reduce T4. Once T3 was okay, if Free T4 was still high I would reduce T4, if it was a bit low I would add some back. I don't know what these changes would do to your TSH.

[Pen1966 in reply to humanbean]

I am at the end f my tether don't know what to do

[Pen1966 in reply to humanbean]

Will try and drop down to 100mgs I think then retest in 6 weeks

[humanbean in reply to Pen1966]

How much Levo are you currently taking?

[Pen1966 in reply to humanbean]

125mg

[humanbean in reply to Pen1966]

If you could cut the 25mcg into two, and take 100 + 12.5mcg it might not be too much of a shock to the system. I think it would be worth trying.

[Pen1966 in reply to humanbean]

will try that thank you

👍

[humanbean in reply to Pen1966]

Don't bother mentioning such a small change to your dose to a doctor. Once a doctor reduces dose getting the higher dose back again is sometimes virtually impossible.

[Pen1966 in reply to humanbean]

oh i wont i can never get an appointment with the gp anyway they are useless

[Soaping]

Good morning Penn 1966, Why is Thyroid UK saying don't use this group as you get more help and better advice from them than any GP or Consultant I have ever seen they just want to know TSH results look at a sheet and say normal! It doesn't matter how you feel.

[Pen1966 in reply to Soaping]

Sorry edited comment

[Gingernut44]

You don’t seem to be getting any good advice from your Endo (surprise surprise). I don’t understand why your TSH is 2.1 with an over range FT4. You have the same problem as me, I needed my FT4 way over range just to get my FT3 half way. I didn’t feel well.You do know that you don’t have to ask permission to lower your dose. You could try lowering it yourself by 12.5 mcg and see how you feel. Retest in 6/8 weeks. The only problem is that It will probably lower your FT3 as well which would show you need some Liothyronine alongside your Levothyroxine. As you have no thyroid you probably do need some T3. Doctors/Endos are there to advise not dictate.

[Pen1966 in reply to Gingernut44]

It's all so hard

[Batty1 in reply to Pen1966]

No its not just try reducing like gingernut suggested and retest … the endo would probably do the same but with a much larger drop in meds.

[Gingernut44 in reply to Pen1966]

Come on now, put your big girls pants on and get proactive - you’ll be surprised how easy it is once you start 😉

[Pen1966 in reply to Gingernut44]

I know what your saying but in the last 6 weeks i have diagnosed with CFS Fibromyalgia and Fnd Im practically on the floor with symptoms

[Gingernut44 in reply to Pen1966]

That could be because your FT4 is too high for you. Who diagnosed you with CFS and fibromyalgia. My GP tried diagnosing me with CFS over the phone - I haven’t seen him since April 2019. I’m afraid I told him what he could do with his diagnosis and then went to a private Endocrinologist who said he could tell just by looking at me that I didn’t have CFS. All I needed was T3.

[Pen1966 in reply to Gingernut44]

My Ft4 was 32 last July August time and i fely bad but not as bad as i do now.

[Gingernut44 in reply to Pen1966]

I edited my reply to you - please take a look.

[Pen1966 in reply to Gingernut44]

Seen it i had every blood test available before i was referred to The CFS FIBRO Clinic yesterday and was diagnosed by a rheumatologist who checked all my pressure points etc

[MEguy in reply to Pen1966]

How are you getting on with ME/CFS now?

[Pen1966 in reply to MEguy]

Awful bed bound

[MEguy in reply to Pen1966]

Try Aripiprazole if you can get it. It is an antipsychotic but Dr Bonilla of Standford University wrote to me and said the following: Thank you for your comments; this is another reason we need to stop thinking aripiprazole is an antipsychotic. There are other benefits. I have seen in some patients aripiprazole is a miracle drug.

-There is data on anti-inflammation (decreasing cytokines),

-Anti-neuroinflammation (decreasing microglial cell activation),

-Immuno-modulator (regulate genes that control T and B cell responses and genes that regulate inflammatory bowel disease),

-decreased amyloid deposition (possible benefit in Alzheimer's and micro-clots formation as a potential mechanism in Long Covid).

[Pen1966 in reply to MEguy]

Can't take what you suggested

[tattybogle in reply to MEguy]

MEguy .. suggesting ARIPIPRAZOLE to thyroid patients seems unwise.

a quick search seems to show it has known effects on thyroid hormone levels .

[Pen1966 in reply to tattybogle]

Exactly