New diagnosis found. Probable secondary hypothyroidism. Partial hypopituitarism. Normal Pituitary MRI. ? second opinion. Further tests?

[Ivorheadache]

Following a move to a different county I found my T3 prescription was cancelled before GP records transferred. So on T4 only From December 2017. I was referred to new Endocrinologist. My records and tests results were reviewed and found to be unusual. All blood tests taken at 9am fasting with 24 hour gap in meds.

29/11/2017. TSH 0.0 (0.27-4.20) FT4 10.1 (12.0-22.0) FT3 5.5 (3.10 - 6.8) All ranges same.

09/01/2018. TSH 0.0. FT4 9.6 FT3 3.0. 100mcg levothyroxine

12/01/2018 TSH 0.2 FT4 9.3 FT3 3.5 100mcg levothyroxine

30/01/2018 TSH 0.9 FT4 12.2 FT3 3.0. 100mcg levothyroxine. (increased to 150mcg)

12/02/2018 TSH 0.0 FT4 19.9 FT3 4.7 150mcg levothyroxine

15/05/2018 TSH 0.0 FT4 22.0 FT3 4.7.

I feel worse since levothyroxine increased (if thats possible). Endo said top of range T4 should really reduce levothyroxine and T3 OK mid range. I should feel better. I’m told it’s unusual to have just TSH not produced by pituitary but no problem shown on recent MRI. Apologies he can’t think of anything else he can do currently to improve how I feel.

My other test results are.. as follows no ranges available currently GP hasn’t got them either.

IGF low normal at 60 mcg/l

Prolactin low 36 mu/l

Cortisol random 195 nmol/l (midday blood Test)

LH 6.5 u/l

FSH 24.5 u/l not as high as expected after menopause.

Oestradiol less than 66 pmol/L

I had a hysterectomy and ovaries removed age 34

TPO and TRAb negative.

So findings in letter to GP and myself are...

My feeling worse, I’m very forgetful, poor left grip and proximal muscle weakness in legs. I appear to have partial hypopituitarism, with TSH deficiency, a low prolactin and, possibly gonadotropin deficiency, but pituitary function is otherwise normal. He said I was planning to purchase Liothyronine from Europe. He can’t suggest any other treatment.

I saw named GP this week. He didn’t understand when I mentioned hypopituitarism he said I’d need a private consultant app to get T3 prescription. I told him I’d get NDT instead as consultations too expensive on a regular basis for prescriptions.

My muscles became stronger on NDT T3 in past but still below normal. I have all the symptoms of GH deficiency. My cousin has Pituitary problems. I’ve also had severe whiplash in 2009 and a RTA with loss of consciousness as a teenager, but my MRI is ok.

Would I be wasting money getting private tests? Or second opinion?

Sorry for long post, past info in profile.

[greygoose]

I very much doubt if FT3 mid-range is ok! Most people need it up the top of the range to feel well.

You've been hypo for a long time, haven't you. When did your TSH suddenly become zero? Do you know what it was when you were diagnosed?

According to one of your previous posts, you were diagnosed with Hashi's, at one point. If you had it then, you have it now. It doesn't go away. The fact that your last ab test was negative doesn't mean you don't have it anymore, it just means that your antibodies fluctuate - as antibodies do.

It is possible to have TSH specific hypopituitarism. But, something just doesn't ring true, there... I think a second opinion would be a good idea, but I wouldn't do private tests at the moment, because you only had them all done last month.

[Ivorheadache in reply to greygoose]

Thank you for your response. My long term GP retired in 2012, I was really stupid then I didnt get copies of my results. Next GP was appalled my Tsh was between 4 - 6 nmol/l

on annual checks so he increased my levo from 100mcg to 150mcg. On my retest Tsh was 18.3. since Oct 2012 it has only been as high as 0.4 nmol/l once. This caused my endocrinologist to keep me on 125mcg levothyroxine for several months and then only add 5mcg Liothyronine for around a year. I feel the Liothyronine dose was never high enough levothyroxine was reduced to 100mcg when Liothyronine increased to 10 mcg after a dexa scan which was intended to show

me I mostly likely had osteoporosis revealled the bones of a twenty year old. Having found I have Heterozygous variant genotype TA in May 2015 hasn’t improved my care so far. My new area has even written in their prescribing policy DIO2 gene needs more research. I never knew my TSH at diagnosis.sorry I’m rambling on!

[greygoose in reply to Ivorheadache]

Well, they can play around with diagnoses as much as they like, it doesn't change anything Whether it's your pituitary or your thyroid, you still need more T3 - nothing's going to change that - and the TSH will remain irrelevant. So, what you either need is an endo that will prescribe more T3, or you buy your own on-line (without prescription) and self-treat. Honestly, who needs these rubbishy endos? They don't know one end of a thyroid from the other! You're best off without them messing you around.

[Ivorheadache in reply to greygoose]

I agree they are rubbishy endos. My new GP is clueless but happy for me to self-treat, but only offering an annual thyroid blood test. Thyroid Thursday blood tests are affordable so I’m going to go DIY! It’s a bit daunting attempting to find and purchase T3 without prescription but things won’t be any worse than they are now Thank you grey goose what you have said has helped me engage logic and make a decision

[greygoose in reply to Ivorheadache]

Not at all daunting. Just post a new question asking people to PM you a link to their trusted on-line sources.

[diogenes Remembering]

You have been on T3 I understand probably for some time before starting on T4. Was this T3 only or T4/T3 combination? Over the period of taking T3, your pituitary has become suppressed, because T3 is a strong suppressor of TSH, like T4. Now you are on T4 at a highish dose, your pituitary is still suppressed and may remain so for the rest of your life, on a healthy dose of thyroid hormone. This is not hypopituitarism as such, but simply suppression of an otherwise healthy pituitary. Your FT4/FT3 ratio at the last test was almost 5/1, which strongly indicates you are not converting T4 to T3 very well. This indicates you need T3 direct in some form to make up the deficiency.

[Ivorheadache]

Hi Diogenes thank you for reply. The highest dose of Liothyronine was 10mcg with 100mcg of levothyroxine. I had hoped with a DIO2 conversion problem I could have tried more or just Liothyronine. I’d buy my own on prescription from Germany if I didn’t have to pay for a private consultation and blood tests each time I’d need a new prescription!