Frustrated

[tarzan23]

I have gone through the turmoil of not knowing when i will ever get better, but most importantly when will the doctors really listen that i do not feel well and treat my symptoms. I am still under the endo care and seen every 3/4 months. I am always seen by different endo although the main man is always around, visit before last was told that i should not be seeing endo and should be under the care of GP. I asked this particular endo why? Was told because i am not diabetic!Could chuckle if it wasn't serious and playing with peoples health.

To cut the story short, i had to tell this particular endo that i am entitled to see a specialist albeit not her. Realise that she has never seen a thyroid patient and didnt really know what to do with me, i was more informed than her and believe me i am bad... especially my memory

The main man intervened and checked my history again... found out i am vit. D deficient and my tsh which i still stuggle to understand was he was not happy with. According to him i am not converting and he has been upping my dose and i am now on 200mcg levothyroxine. I have put on 20 kg since starting levo and i have never been more careful of what i eat. I have my med late at night and give atleast 3-4 hours after i eat.

I have an appointment in June but i dont feel ok at all,most likely he will up my dose again. My GP took blood test and this are my results:

Serum TSH Level 8.64mu/L (0.27-4.20)

Serum T4 Level 12.3pmol/L (12.0-23.0)

All previous results i had did not have any ranges and it actually said reference ranges may not apply.

Please could someone interprete this for me. BTW, was told all other vitamins including b12 are ok.

[Hennerton]

If you are not converting, it is useless for your endo to give you more T4. He should reduce T4 and add T3, Liothyronine, which is the hormone that your body needs every moment of the day to perform properly. This should improve your symptoms considerably. You will still need to get the right balance but you will be on the road to recovery. You are clearly still very hypo, as your TSH is high. I suggest you ask for a quicker appointment, in the light of your high TSH and hope for a prescription as soon as possible. Failing any help there (and your endo obviously does not inspire you with confidence,) perhaps you could try the private route. It will be worth it to get hold of T3.

[tarzan23]

Thank you reallyfedup123 and Hennerton for your prompt replies. Does my result show i am not converting? I have been really tired and short of breath for a long time, had a chest xray and GP said that my heart is enlarged but nothing was done.

I will go private hopefully, that will sort it out. I am really fed up that i can't do much, i thought after about a year, things will get better but it is actually worse... sorry if i sound whingy!

[lisabax in reply to tarzan23]

I don't think your endo or anyone will know if you are not converting unless they test your free T3. A high free T4 and low free T3 will indicate a conversion problem. The results you have just show that you are hypo and obviously being under medicated. These endos are so ignorant! If you go private, do look at Thyroid UK's list of private practitioners who have a special interest in thyroid.

[tarzan23 in reply to lisabax]

Thank you lisabax, do I need to pm anyone for the list?

[lisabax in reply to tarzan23]

Louise Warvill has it, so yes, do pm her LB

[Boronia]

Hi Tarzan23-you don't sound whingy at all! You sound frustrated and feeling let down by the medical system and totally peed off at still feeling rotten. It seems that most docs and Endos think that thyroid probs are easy to treat but for lots of us they are not. You are on the right track-learning for yourself and asking questions. For many of us we have to take our health back into our own hands.

[tarzan23 in reply to Boronia]

Thank you Boronia, that's exactly what I will be doing! Take my Heath and do what I can for myself, I certainly cant carry on like this!

[puncturedbicycle]

Your tsh is far too high - too high for someone untreated even - and I don't think you should wait until June for your dose adjustment. Can you see if they will do you a phone appt or could you send an email? You need more meds and not just levo, meds that your body can use.