test results - preparing for gp appointment this week

[StillEverHopeful]

I've just phoned the GP's for my test results - the note he put was to not increase dose and test in 3? months time (I can't remember) I have an appointment on Thursday to ask for 'more please' Please can you help me prepare a strategy? or have I got to accept the CFS label?

the results are:

TSH: 0.17 (0.35 - 3.5)

T4 : 13 (8-21)

T3: 4.1 (3.8 -8)

I do feel improved since we have had this lovely hot weather (perhaps I'm a lizard!) but still can't do a full day of normal life and know that once things cool I will feel bad again. I feel as though I am being kept from reaching my potential of normal life.

I also struggle to keep Ferritin above 30 so will also bring this in to the appointment.

I hate having my neck touched, even necklaces are unpleasant to wear.

I read about the pinch test - I gave myself small bruises trying to pinch the skin have tried the Achilles reflex - my adult son did it and said first tap it was normal and then it slowed on subsequent taps.

I have a fast resting heart rate (80+) which has been so all my life, after some light housework it rose to 127 perhaps this is linked to the iron? BP is really good.(like a teenagers according to GP recently) but am worried to mention it in case he reduces the levo.

I feel so anxious that GP will just look at TSH and say everything else is in range so "the computer says no" and don't know what to do next.

I know someone posted on here (to someone else) about a medical test that can be done to prove that TSH is not reliable in a specific individual - something about giving a trigger produced by the amygdala (perhaps) that causes TSH to be produced and they test the before and after TSH. Can any one enlighten me as I cant find it again.

[cwill]

You certainly need to discuss the low in range FT4 and FT4 levels. If they are only looking at TSH and have tested but don’t take account of the frees I would try to get a referral to a knowledgeable endo. That may be very difficult but I would consider every NHS angle and resist a CFS diagnosis as often it is a medically unexplained symptoms diagnosis that will mean testing and actually listening to you may stop. Try to push for the thyroid to be sorted properly before they try to diagnose something else.

[cwill in reply to cwill]

If they try to diagnose CFS ME you need to get them to state what diagnostic critieria they are using and what diagnostic code they ascribe. None of this is easy so perhaps take someone along and record the session (you do not have to ask their permission). They should use Canadian Consensus Critieria or International Consensus Critieria not simply NICE, that is out of date and being rewritten currently, or any others that omit Post Exerctional Symptom Exacerbation or PEM. The cardinal sign is all symptoms are much worse after cognitive, emotional or physical effort, not simply unrelenting fatigue of unknown origin. See MEPedia for more information.

[StillEverHopeful in reply to cwill]

Managed to get Endo referral (full reply below to SeasideSusie)

Told him would not accept diagnosis of CFS while ferritin not optimal and T3 & T4 not inline with Prof Tofts article I’m Pulse.

[SeasideSusie Remembering]

StillEverHopeful

Use the Dr Toft article in Pulse magazine which I mentioned in my reply to your post here healthunlocked.com/thyroidu...

Did you email Dionne for the article?

A normal resting heart rate is between 60 and 100 so yours being 80 isn't classed as fast. Anything like housework, climbing stairs, walking, etc, will raise your heartbeat so again 127 when doing some housework isn't unusual.

[StillEverHopeful in reply to SeasideSusie]

Thanks SeasideSusie. You are a treasure.

Yes I have Dr Tofts article - it worked last time but am having to sees different GP as my regular one is on maternity leave. I hear this one is “earnest” ( I know who to avoid too 😁). It feels like starting from the beginning again.

Relieved to hear what I thought was a fast heart rate is normal.

Have started to take temp first thing, (35.5- 35.8) but have been doing it during the day too- never above 36.1C.

I’ll report back on how I get on. ❣

[SeasideSusie Remembering in reply to StillEverHopeful]

Good luck!

I have one GP who is TSH obsessed and keeps saying to reduce my dose, gets thyroid tests done, I never hear back because a different GP sees the results, sees the FT4 and FT3 nicely in range and is satisfied. It's a never ending battle each time I see this GP (I try to avoid her), she keeps bring up my TSH whatever I go to see her about.

[StillEverHopeful in reply to SeasideSusie]

Yup the GP I saw was TSH obsessed!

I showed prof Toft article saying pointed out only just in range with T3 and neither T3 or 4 were near Prof T’s recommendations.

Totally disinterested in ferritin of 30 and the need for it to be higher for good thyroid function.

Very much the “computer says” type of GP.

Thankfully he didn’t try to reduce Levo and I got another script for a different iron so see if less constipation.

Told him I wanted to take b complex got agreement but cautioned not to take continuously .... I’ll stop for 5 days before next test 😇

Also got Endo referral - probably because I said I wasn’t prepared to accept a diagnosis of CFS while ferritin not optimal and low range T3 & T4 could be improved. Also asked what was going to be done about my uncomfortable neck. Now to find out what the Endos are like at my local hospital.

The war for health continues...