Thyroid or not? So confused...

[chloemcm]

Just had another useless appt with endo. Still have all the hypo symptoms - fatigue, muscle pain, cold, hair thinning, etc.

Recent bloods

T4 12 (12-22)

TSH 3.6 (0.27-4.2)

TSH is steadily rising. Off levo due to cardiac side effects. Endo says I no longer need med for thyroid as it is perfect and the last low reading of T4 11.5 was false! When I asked about it being low she just snapped back saying "I'm parking thyroid, it's not your thyroid, perhaps you need to go to rheumatology". She doesn't plan to see me again.

Cardiology appt on Mon but palpitations and fast pulse have well settled since stopping Levo but other symptoms have got worse especially the cold feeling and fatigue

Feel so confused - can anyone please advise me what questions I should be asking. I always seem to come out of these appts more upset and none the wiser.

Wish I could "park" how unwell I feel.....

[shaws]

I am sorry you've had a dreadful consultation. She would be the last person you wanted to see anyway, as you would have absolutely no confidence. The ones that only take notice of the TSH are to be absolutely avoided as they have no 'sense'. The take no account of clinical symptoms which, for the patient, is the most important. They want an answer as to why they have all these symptoms but are sent off with a flea in their ear.

We have to read and learn if we want to get well. These are some links I copied and pasted from an earlier response to another:

Normal doesn't mean you don't have a thyroid problem and will give you a couple of links if you cursor down several responses:

I don't know why she stopped your levo and that's why you are feeling worse, although I did have lots of palpitations when on levo. Sometimes it can be due to hypothyroid and sometimes the fillers/binders in medication.

Your TSH is high. In the USA you are usually medicated when TSH is 3, in the UK you sometimes have to suffer until it reaches 10, which is quite barbaric. Some GPs medicate when it reaches around 5 but if you've already been diagnosed I don't know why levo has been stopped.

[chloemcm in reply to shaws]

My levo was stopped temporarily by my gp to see if the palps would stop - they did. So I was sent to endo to get an alternative medication and she said my thyroid is fine now and I don't need medication anymore and perhaps I never did. She has completely ruled out primary hypothyroidism which she herself actually diagnosed! Now gp is taking her advice and won't prescribe me anything. I feel I'm being pushed around all the depts and not being treated for symptoms at all.

[chloemcm in reply to shaws]

Thanks Shaws, I'll read the links.

[shaws in reply to chloemcm]

See below I've redid links.

[shaws in reply to shaws]

I didn't know I couldn't copy and paste links, so here goes again.

thyroiduk.org.uk/tuk/diagno...

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

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

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Limbolass]

Did you have an ultrasound of your thyroid?

[chloemcm in reply to Limbolass]

No, she looked at my neck and said "you've a perfect little thyroid - no sign of any nodules there"!!

[Jackie]

Hi You desperately need an FT3 test, on line? I use Blue Horizon the finger prick test is simpler and no medics involved.

I had the same problem with Levo and have to take nDT, this is T4 and T3 so would treat the FT3. but test first.I take Nature thiroid, good and reasonable price.

Best wishes.

Jackie

[chloemcm in reply to Jackie]

Thanks Jackie, I've sent you a pm.

[fumanchu]

Is taking Kelp of any use to people with low thyroid? I know some with ME find a huge difference on it, although it didn't help me at all. My hubby has low thyroid with PA and I got him Kelp but haven't started him on it yet. Just thought it might help chloemcm

[hellybaybee in reply to fumanchu]

I think it does... I think things like seaweed and kale help too... I think its to do with iodine

[hellybaybee]

I had exactly the same tsh when i was told that i didnt have a thyroid problem! Weird thing was, i never thought i did... I went to the dr with terrible period pain which left me throwing up for 3 days a month and unable to go to work. When i read about it i realised i had many of the symptoms (initially you think you imagining it dont you? But its not really normal to fall asleep at midday and have painful joints in your twenties) after some research i found out how difficult it is to get a diagnosis in the uk and how we have a far more extreme measurement when it comes to thyroid disorders than other countries. I sought "thyroid friendly" specialists which is when i got my diagnosis. What i would say to you is this; your results suggest that you have a thyroid problem, your gp probably doesnt want to give you the medication as they are trying to cut costs (mine recently cut my medication too) you may have a bit of a fight on your hands to get what you need and if you can afford to see a private "thyroid friendly" specialist, i would reccomend it as financially they have nothing to lose. Maybe its time to change your gp as well.. She sounds rude aside from anything else.

[hellybaybee in reply to hellybaybee]

Oh yes, meant to say, u may want to look at your diet as there are foods that you can eat that help... If you look at the o positive blood group diet, that has alot of foods that help those with thyroid problems (partly because it follows the theory that people who have o positive blood have a propensity to thyroid disorders) it will also tell you what to avoid