Desperate

[debsmitch60]

Hi all, I have been struggling with hypothyroidism for around 5 years where I have nearly every symptom but also been putting weight on.

I was started on Levothyroxine and increased twice then seen an endocrinologist who I convinced to try me on T4 and also some T3. Still didn't feel better until I was just put onto T3 alone. I am only on 10mcg twice a day and initially after being on it for a bit I actually started to feel better. I had an appetite I had a bit of libido as well as hair stopped falling out so much and I could also think a bit clearer. Constipation eased and I don't feel the exhaustion as much.

Now however I seen to have plateaued and my endocrinologist said she would not increase on T3 dose because she only has a couple of patients on it plus maybe the cost to the Nhs too.

I feel so desperate I went to my Gp who told me oh you are really overmedicated because my TSH is now 2.74 but she then added that my T4 was in range but very low but didn't say what it was but continued to say I think that maybe you are not converting properly. I was upset and couldn't think straight that day so came away feeling worse than when I went.

I feel so desperate that I am looking for blood tests that won't cost me a fortune but I think I need rt3 tested but not sure.

So I am asking advice as to what I do next and wondered if there is actually any doctors out there that will treat me holistically.

I live in Coventry but would be willing to travel anywhere to try and get a halfway normal life.

Feeling hopeful that one of you lovely people would be able to advise me.

Kindest regards Deb xx

[SeasideSusie Remembering]

Debsmitch - do you have your latest test results, with reference ranges, to share?

You are not likely to have a problem with rT3, that tends to happen when on Levo and FT4 is very high and FT3 fairly low in it's range compared to the FT4, which would indicate that the T4 is producing rT3 instead of enough FT3. Also, to reduce high rT3 one way is to take T3 only for a while, and that is what you are doing.

"I went to my Gp who told me oh you are really overmedicated because my TSH is now 2.74"

Utter rubbish, she doesn't know what she is taking about. It's too high. The aim of a treated hypo patient generally is for TSH to be 1 or below if that's where you feel well.

"but she then added that on T4 was in range but very low but didn't say what it was"

So she doesn't understand that when taking T3 only, and no T4 (Levo) then of course FT4 is going to be very low. Your hypothyroid, your thyroid is producing little or no T4 of it's own, and you're not taking any Levo, where on earth does she expect the T4 hormone to come from to give a higher FT4?

If you felt well on T3 only, but your endo won't increase due to cost, ask her if she's willing to monitor you if you self source the extra. Lots of people here but their own.

[Clutter]

Debsmitch60,

Your GP is clueless. You are undermedicated not overmedicated to have TSH 2.74 and of course your T4 is low when you are taking T3 only which doesn't need conversion.

Your endo is wrong to keep you undermedicated due to cost. She should consider what is clinically best for you, her patient, and not have an eye to NHS drugs budget.

If your endo won't increase your T3 dose will she prescribe you some Levothyroxine in addition to T3? If you don't want to add in some Levothyroxine I think your only option is to buy some T3 online and self medicate. If you want to do this write a post asking members to PM you sources of T3 without prescription.

You don't need rT3 tested. You aren't taking Levothyroxine and your T4 is low so you won't have unconverted T4 converting to rT3.

You can order private thyroid tests via thyroiduk.org.uk/tuk/testin... but you don't need a test to tell you FT3 is low when TSH is 2.74.

Email [e-mail] for a list of member recommended endocrinologists and practitioners.

[Angel_of_the_North]

"I feel so desperate I went to my Gp who told me oh you are really overmedicated because my TSH is now 2.74" Surely your GP didn't think you were overmedicated with that TSH (which shows you are undermedicated). Are you sure it wasn't 0.274?

[debsmitch60]

Thank-you all so much for your advice. I am a bit confused with what doesn't need testing if I am on T3 only ie I don't need rt3 as I am not on Levothyroxine. I am reading all the time trying to help myself but am struggling to retain the information.

My endocrinologist said I was in her letter to my Gp that I was tested on 16/02/17 and my TSH is normal at 2.74 mU/L, and she wants my Gp to continue the same dose. Although my wrote that my Gp said that she thought I was overmedicated, oh God it hurts my head trying to make them understand.

I hurt my back 20 years ago and live in pain with very strong medication but that is nothing compared to living with hypothyroidism. I honestly feel so awful and from never ever being ill before, now I seen to have a virus every couple of weeks and seems like I get rid of one and then I get another, the other strange thing is I have started to be have reactions to different things like the odd time I might want just a glass of wine or anything my face starts to itch and go red and sore. And my upper arms at times will just go red and blotchy and hot, it's weird.

I am so grateful for you all explaining things to me and I am now going to get a blue horizon plus 11 blood test since I now low I don't need the rt3 but could anyone tell me if that has the right blood tests for me being on just T3 please? I am going to ask my endocrinologist about upping my dose one last time and if not then I will ask about her monitoring me although I might look for a different endocrinologist to be honest.

One last question, I have been reading about slow release T3, do any of you know if it's prescribed in the UK and whether I can get that myself privately or indeed if it's better.

Sending you all gentle hugs xx

[SlowDragon Administrator]

I think you need to get vitamin D, folate, ferritin and B12 checked, plus thyroid antibodies

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven private tests- £99 with option to pay extra for private blood draw

All thyroid blood tests should be done as early as possible in morning and fasting and don't take T3 in 12 hours before

[debsmitch60 in reply to SlowDragon]

Sorry I only just realised that I could reply directly. I honestly feel like I am losing the plot a lot of the time and feel stupid 😥

[debsmitch60]

Thankyou SlowDragon very much, I am going to sort that out today xx

[SlowDragon Administrator in reply to debsmitch60]

Medichecks run "Thyroid Thursdays" - might have an offer on today