TSH 11.5 and still no help from my GP... HELP

[sharni07]

My TSH has just come back as 11,5 and T4 8,6 vitamin D is very low at just 12.

I have not posted on here for almost 2yrs but once again I am feeling worse than ever and am desperate for answers, advice help??

I have every symptom you can imagine and feel so awful, worst of them being the chronic fatigue and dizzyness.
Anyway the highest my TSH has been before was 5,5.... I was on levothyroxine but was put on leothyronine - pure T3 last summer. I felt better at first but since October have got worse n worse. I am on 40mcg of leothyronine and 40mg citalipram for the depression and I feel no better my results came back stated above n all my GP has done is increase my does of T3 to 60mcg and given me nothing for my low vitamin D which is VERY low n should be well over 50 with 80 being the average. This I decided to get tested for myself as I have read low Vitamin D is very common in thyroid patients which explains why a lot of us do feel a little better in the summer months I guess.

I am feeling so frustrated... after almost 3yrs no referal to an endo... my GP is useless and I feel so ill at the moment  I am seriously thinking of just going down A and E and pleading with the drs there to please help me!! I have friends with the same condition and we all seem to meet the same brick wall with our treatments it's so frustrating.
I am so shocked my level has gone up so high to 11.5 I really hoped my GP would finally take me seriously having doubted I was hypo at all when I first mentioned it 3yrs ago she said I was only sub-clinical she can't deny now that I def am hypothyroid but she doesn't want to listen to all my problems just write me another prescription and send me on my way. the lowest I have got my TSH is 1.0 and I felt better not great but better, how low do I have to get it to feel normal?? I can't take this much longer I need my lofe back and to get back to work I have been off for 3yrs now and enough is enough....... someone plz help me?? x x x x

[Barb135]

Is TSH all that's being tested?  

[sharni07]

I am on pure T3 Leothyronine as T4 levothyroxine didn't work for me.....

[Barb135]

Often, we see people on T3 only meds that feel good for a short time, then get worse.  Can you get her to go back to a combination of T3 med and T4?  

It could be that you simply don't convert the T4 to T3 like you should, so if you went on a dose of T4, then added just a small dose of T3, that might help.......  That's the problem I have; I don't convert T4 as well as I should, so my "main" medication is a T4 med, but I supplement that with a small dose of T3 med.

Is TSH the only test being done?  You really need to have both Free T3 and Free T4 done, along with that, as those are the actual thyroid hormones.  Dosing, based only on TSH, is almost always a recipe for disaster...... I had a doctor who did that and kept me very ill for months.  

[sharni07]

I have never been tested for anything else... I had to ask for her to try me on thyroid meds cos she said I was only sub-clinical 3yrs ago as my level was TSH 5.5 I was on levothyroxine 150mcg but it did very little so I nagged her to put me on pure T3 as had heard it had good results and at first it helped but now I seem to have got worse all of a sudden. My GP seems to think I am healthy and a bit of a moaner I think... very frustrated with her,,,

[Barb135]

Have you ever been tested for thyroid antibodies to see if you have Hashimoto's Thyroiditis?  

We do find that our members from UK have a much harder time getting proper treatment for thyroid than in most other countries; however, I do find it very surprising that your doctor only gives you T3 medication...... that's very rare, and often not helpful, especially when not even testing for Free T3 and Free T4........

[gimel]

Following is a copy of the info from your latest thread.
________________________________


I just had my latest blood results back and my TSH has gone up to 11.5 and my serum free T4 level is low at 8.6 not good. Also my Vitamin D test came back and is Very low at only 12 should be 50- 200. My WBCs also came back HI at 13.4 and my neutrophil count is HI at 8.4 the last 2 things my GP never even mentioned to me! I feel worse than ever this is my highest TSH result and all my GP has done is increase my dose of leothyronine (pure T3) from 40mcg to 60mcg. I have no energy, fell sicky all the time n keep having dizzy spells too... Something is wrong I just know it... :(

I am on 60mcg of leothyronine and my GP prescribed me just 1500mg of Adcal D3 for my vitamin D deficiency.
I feel so ill all the time, I have zero energy... I feel like a 99yr old woman and move like one too. Can anyone plz offer any advice on these results and what I should do I am feeling so desperate now, I just want my life back.......
_________________________

Is London too far away to consider,  for a good thyroid doctor?

[Super_sally888]

Hi,

On the Vitamin D; you can treat yourself for the low vitamin D.  Just buy VitaminD3 from the health food store.  Probably you should take at least 5000 iui per day.  Retest D levels after a month to see if you need to increase the dose further.

D3 is actually more potent than the D2 that doctors give out.

ON the thyroid.  Your doctor is clueless.  Your TSH needs to be much lower.  FT3 and FT4 should be tested also and meds adjusted accordingly.

[sharni07]

Hey,

Yes it would be nice to find one who knows what they are doing.
I like in the south east, on the border of surrey and hampshire.

x

[gimel]

Definitely sounds like you need a good thyroid doctor.  Those seem to be very scarce in the UK.  I do know of a few that I have learned about from other members.  Can you give me a little more info on where you are located?  I tried Sussex, using MapQuest and had no luck.