Help with GP please, do I need to change or complain?

[LongtimeRLSsufferer]

I had these results about 6 weeks ago Free T4

Compensated hypothyroid TFT results.

Suggest repeat in 3-6 months

Serum free T4 level 11 pmol / L (11.0 - 23.0 ) SR

! Serum TSH level 13.23 mu/L (0.35 -5.50 ) SR

Thyroid Stim Hormone

Free T4 request added by lab

Notes: raised BP

and was called back for a another test. I asked for the full list of TSH, free T4, free T3, reverse T3, thyroid antibodies, TPO and TgAb, B12, Ferritin and 25-hydroxyvitamin D like it told me to on the 'girls guide to Hashimotos' But my GP refused She said there was no need!!! She telephoned me with the results to say they have improved slightly but would not give me the exact numbers.

I said about seeing an Endo, she refused, I mentioned having had my pituitary tested years ago she said my 'thyroid is obvious still attacking itself but it is producing enough hormone at the moment to cope'.

I am so exhausted but weirdly I have days were everything seems to be going in fast forward then days when I can hardly move, does that make any sense? I have been like this for as long as I can remember, even as a child but have always been overweight, suffering now with excessive facial hair, body pain, chronic forgetfulness, restless leg syndrome (really bad) severe constipation (diagnosed recently with a slow moving bowel) palpitations, chest pains, dizziness all the time, high blood pressure, high cholesterol (which they failed to tell me about) eczema, acid reflux, frozen shoulders, migraines, even my eye sight has recently altered by 25% after being the same for over 20 years and much much more. And what do they do, NOTHING. When I asked he about a retest she said she would do it again in SIX MONTHS.

What more can I do, I only changed doctors about 2 years ago as my last one was even worse. I wrote a letter to this one as I hardly leave the house any more explaining just some on my problems asking for help and she rang me telling me to 'prioritize some of them and come to see her with a couple at a time'. I ask you what is that going to sort if they are all associated with the Thyroid?

Any advise greatly received as I just do not know what to do and am so close to breaking point. I even have a PIP assessment in a couple of weeks and according to them there is 'nothing wrong with me' Sorry for ranting but sat here crying my eyes out now, you all are the only ones that understand xx

[Marz]

Any chance you could have some tests done privately ?

[LongtimeRLSsufferer in reply to Marz]

which would you recommend? all of the thyroid ones? mum had an over active thyroid removed when i was a kid but dont know if its passed down but also surely i am under active if anything?

[Marz in reply to LongtimeRLSsufferer]

If you check out the main Thyroid UK website there is information there about the private tests available. Blue Horizon is one and Genova Diagnostics is another - although I believe others are mentioned. The packages they offer maybe a good guide but the list you mention at the beginning of your post will be very good....I would just add Folate and Iron.

Good luck

[LongtimeRLSsufferer in reply to Marz]

Ok thanks

[Ansteynomad]

Are you on medication or not?

If not, I suggest you write to your GP and ask her some pointed questions. Can responders to this post help to put a letter together?

[LongtimeRLSsufferer in reply to Ansteynomad]

Not for thyroid no. I take several other meds including things like co codamol antihistamines, two different ones for over active bladder, anti depressants, acid tablets, and patches for restless legs, and migraine meds. But from what I have been reading most of these things can be linked to thyroid. I just feel like I am banging my head against a brick wall. I think the letter is a good idea again though so any help greatly appreciated

[jimh111]

'would not give me the exact numbers'??? Tell the surgery you want them.

I wouldn't ask for all the 'TSH, free T4, free T3, reverse T3, thyroid antibodies, TPO and TgAb, B12, Ferritin and 25-hydroxyvitamin D'. I don't think there is a need. It's looks like you have primary hypothyroidism. If you get fT3 figure as well it will probably be quite good as the high TSH will stimulate more T4 to T3 conversion in an attempt to compensate for the low fT4. Thus the fT3 figure might undermine your attempt to get treated.

Reverse T3 is really difficult to interpret, I suspect most people who request it haven't a clue how to interpret it or what it means, it's also expensive. The antibodies might help understand why your thyroid is failing but wouldn't alter your treatment, that could come later if you still have problems once you have been treated. Ferritin would be useful, as for vit d it's a lovely day today so it's free of charge! Seriously, I think asking for loads of blood assays just acts as a distration from the obvious and reinforces the 'blood test' mentality.

The comment about prioritizing your symptoms is just plain stupid, the whole point is that your overall picture points to hypothyrodism and a cheap simple option is to give you an incremental trial of levothyroxine for the next 6 months or so. They can then reassess you after the trial.

I suggest you write to the GP with a brief (this is difficult for hypothyroids) description of your symptoms and (more important) how it is affecting your life now, be concise. Then say you would like either:- 1. An appointment with an endocrinologist in the next few weeks (important to give a time limit). or 2. An incremental trial of levothyroxine over the next six months. I'd suggest you take some photographs of yourself now and keep them. Our appearance often improves (no insult intended!) after we've been treated for a while and this will be invaluable evidence if the levothyroxine trial works out. Hopefully with a two way choice they will take the lazy option of picking one of the two options.

Jim.

[LongtimeRLSsufferer in reply to jimh111]

Hi, Jim. Thanks for this. I will take all of this advise greatfully. I just feel like I have spent years trying to get diagnosed but not getting anywhere. I was beginning to think I was going mad and I don't remember the last time I even felt 'human'.