thyroid misery

newwifey

Hello all
I have been doing a lot of reading on my condition and would love if someone could clarify any of the following

1. Has anyone on this thread been prescribed Natural Dessicated Thyroid, can it be purchased in the Republic of Ireland?
2. Has anyone been prescribed T3 meds, are they available in the state and are the prohibitively expensive?
3. Is the antibody test for Hashimotos routinely performed by endos?

I spoke to my local pharmacist but he did not know what meds I was referring to as I didnt know the brand names.
Thanks!

Staplor

I'm on Armour Thyroid, others are on something called Thyroid.

Thybon is a T3 medication available. I spoke to the pharmacist about it, Thybon and Eltroxin worked out about the same as Armour.

Armour was about €35 for a bottle of 100 tablets 60mg. I take 3 x 3 days a week, 4 x 4 days. I was on a really high dose of Eltroxin with little improvement although bloods were fine. Armour has shot up in price and now costs me about €95 per month. Boots and Tesco are good pharmacies for ordering it in. Local pharmacist could do it but was pricier for me.

I can't go back to Eltroxin, I had ridiculous brain fog, I've been on Armour for about 4 years, and have just completed a part time masters while working full time and have a kid now too. No chance I could have done any of those on Eltroxin.

newwifey

Staplor, thanks so much for your reply. At least NDT is available here. Im on Eltroxin for a few months. I feel worse on it than off it. Need to push for a change in meds i think

Staplor

I had to really push my doctor, but he's since put a few others on it. Unlicensed does not mean illegal, it just means that they haven't done the tests in Ireland, they have them done in the US.

I read the other day that Hillary Clinton is on Armour. It was on the internet, it must be true!

Brioscai

Looking for some advice. I'm 5 weeks pregnant, TSH a little under 3, with thyroid cyst and nodules, just prescribed a low dose of Eltroxin.

Firstly, should I be seeing an Endocrinologist? Privately or through a maternity hospital?

Secondly, does being hypo preclude me from midwives clinic or will I need to attend a high risk endo clinic?

Thirdly, would anyone recommend Holles St or the Coombe?

Thank you.

njs030

Brioscai wrote: »

Looking for some advice. I'm 5 weeks pregnant, TSH a little under 3, with thyroid cyst and nodules, just prescribed a low dose of Eltroxin.

Firstly, should I be seeing an Endocrinologist? Privately or through a maternity hospital?

Secondly, does being hypo preclude me from midwives clinic or will I need to attend a high risk endo clinic?

Thirdly, would anyone recommend Holles St or the Coombe?

Thank you.

Normal levels of tsh are 0.5-4 so you seem to be well within that range which would usually mean you aren't hypo.Did the doctor explain why you've been put on meds?

Brioscai

NotJustSweet, the Dr. had advised that I needed to go on Eltroxin before as you should be between TSH 1-2 to get pregnant and below 2.5 in the first trimester (this I think is on foot of NICE guidelines in UK). I've also miscarried and had threatened mc before. As I have cyst etc, my thyroid is already out of whack. I have hypo symptoms as well (cold hands and feet etc).

njs030

Brioscai wrote: »

NotJustSweet, the Dr. had advised that I needed to go on Eltroxin before as you should be between TSH 1-2 to get pregnant and below 2.5 in the first trimester (this I think is on foot of NICE guidelines in UK). I've also miscarried and had threatened mc before. As I have cyst etc, my thyroid is already out of whack. I have hypo symptoms as well (cold hands and feet etc).

Oh I see, your doctor is very good and on the ball! Maybe they could suggest answers to your questions? I saw your post in the pregnancy forum too so they will definitely have good answers.

Congrats on your happy news!!

Edit- have you read the hypothyroid mom blog? Lots of great info about hypo in pregnancy.

Brioscai

The doctor said avoid midwives service, that consultant led care is better if on meds. Also no good reasons to choose with HS or Coombe, is much the same. I have experienced HS before and the care was dreadful for HG and threatened mc. That is why I'm considering elsewhere. Their midwife service was amazing though.

Thank you for taking the time to reply.

RentDayBlues

Strange doc would recommend consultant over midwives purely because of thyroid. I've had 2 successful pregnancies, the first I went to see a private endocrinologist and he was amazing. On second pregnancy I just went to gp. But I was a long term hypothyroidism patient so I felt confident in dealing with it

If you are a public patient you will be attending the special clinic anyway and see a endo anyway

Best of luck with the pregnancy

Staplor

Did anyone ever get NDT in the Canary Islands, I'm heading over soon and wondering is it worth my while stocking up while I'm there.

Brioscai

Thanks RentDayBlues, I've a few other things going on so I'm not sure whether the consultant had that in mind or just a preference for Dr led care. Thank you for your help.

cyning

Brioscai wrote: »

Thanks RentDayBlues, I've a few other things going on so I'm not sure whether the consultant had that in mind or just a preference for Dr led care. Thank you for your help.

I'm in Kerry so no help on the hosp choice but was seen by the docs in the high risk clinic on both my pregnancies and had hg on my first and was close enough to it on my second. It would be one of the reasons they want your TSH lower as it can aggravate hg. Hope your feeling ok hg is just horrendous. Wouldn't wish it on my worst enemy.

Personally if you are seeing an endo already I would keep seeing them.

Corruptedmorals

Does anyone know the lab range for free t3? St James lab or any Irish lab. It's not printed on the results (which are 1.3). TSH is back down to 2.8 after increasing Eltroxin back to 100mcg but t4 is back up. Not sure if free t3 is even useful but I'm seeing an Endo in a few weeks so that should be good as heart rate is unchanged..still too fast.

RentDayBlues

Not sure re James but the ones I've had done are 1.2-2.8 and 1.1-2.5

Wyldwood

Can't see a Free T3 result but you can search here:
http://search.stjames.ie/sjhservlet/Search.jsp

In CUH the Free T3 range is 3.9 - 6.7

Corruptedmorals

Thanks all, just realised I meant total t3 sorry about that. Their range is 1.3-3.1 on that link.

Delta7

Hi All,

I was diagnosed in 2014 and took about a year to lose weight and feel well again but resently I am suffering from bad acne, and it is very frustrating. Has anyone else suffered and is it linked to Hypo? Im assuming its hormone related but would be grateful if anyone has any experience of this and advice? Should I go to dermatologistetc. Many thanks

implausible

Hi, I had this after being on eltroxin a few months. It was horrible cystic acne on and below the jawline. I increased the water intake and tried an awful lot of products. The only one that did any good was Roche Posay Effeclar Duo +. I just used in on the problem area and it seemed to work, but it might have just been my body adjusting to the dose.

Hope this helps.

Clarehobo

Hi,

I am really struggling with my GP.

Bit of background - I have low iron for the past three years on and off. On top of that my TSH is fluctuating. Always between 4.5 and 6.8 so borderline.

I had been exhausted, depressed, losing hair in clumps, dry skin, ringing in ears, memory loss, difficulty concentrating - you name it, I have had it. Any time a new symptom happened I would look it up and it always seemed to lead back to hypothyroidism. Some of these symptoms have become problematic in the last 6 months.
After just over 2 years with one GP I moved as I was getting nowhere. I went back to a GP in my old area.

I am on 25mg of Eltroxin for the last three months - I went in to request a referral to a specialist and she finally gave me the prescription.
So my depression/anger seemed to calm down fairly quickly but my exhaustion is still there. My short term memory and concentration is getting worse, my hearing is getting worse, I am using incorrect words even though I know they are incorrect.
I went in for a blood test last week after three months on meds and again asked for a referral. I was again refused - she promised she could manage it. I rang yesterday for results. She texted me that my serum iron is at 17 and gave me no details about my TSH, T4 or T3. I had also requested her to check my B12. No word on whether or not she will up my dosage.

I am so frustrated. I am starting to get depressed again. I feel like she thinks I am a hypochondriac.
Has anyone experience of this and how to deal with it?
I just want to get better:(

Thanks,

CH

Wyldwood

Clarehobo, I think everyone here will empathise with your situation as we've all been there. Feeling like a hypochondriac/malingerer is par for the course when you're hypo. Your TSH looks high and you should probably be on a higher dose of meds. However, your FT3 & FT4 results are more important, are they in range? Your low iron could also be a big factor in how poorly you feel.

If I were you I'd be looking for a new GP and demanding a referral to an endo.

Clarehobo

Thanks Wyldwood - I left a message for her to call me with the results and the TSH is up around 3.8 which she is happy with and was considering taking me off the drugs again. She seemed to be happy with my serum iron level and B12(300). She didn't give me T3 & T4 results - I specifically asked her to check them the day she took the bloods.
I explained to her that I am feeling worse at the moment (which I had explained to her last week as well).
She agreed to up my dosage so I take 25mg one day, 50mg the next and keep varying it that way.

I am picking up the prescription tomorrow and will ask for a print out of my results.
I am going to give it a month at this dosage level.
If it does not improve, my dentist offered to refer me in to an endo so I will go that path. This is the second GP and I am just worried if I go to another I will end up at the same point after a year of blood tests and no resolution.

Corruptedmorals

Clarehobo I would definitely second getting a new GP. First though get the receptionist in the current one to print out all relevant blood tests- you're entitled to these. It will cut down on repetition but you might still need others if your GP didn't request them. It is so worth it to have a GP that's on the ball!

Saw the endocrinologist today, I'm a bit puzzling because I look and have some overactive symptoms (and a borderline/high t4) but clinically hypothyroid and Eltroxin reduction showed that beautifully. Have to dig out my early bloods and get metapherine (sp?) tested. She is querying whether I could also be hyperthyroid which is very rare when displaying the opposite in bloods.

Corruptedmorals

Hi all, have just gathered together old blood results from the first years of diagnosis as requested by the Endo I saw recently. One of them was TPO antibodies- I've always been told I have autoimmune thyroiditis but not Hashimoto's (my sister however DOES have Hashimoto's) but the antibodies were positive by a good bit, a little more than double the max value in the range. Interestingly, I can see from correspondence I had to get too that they were also positive although less so six years previous to that, when I was 13. At that time TSH ranged from normal to slightly high.

Can you be TPO positive and not have Hashimoto's or is it an automatic thing that you must have it by definition? I've never had an issue with goitres that I know, just swollen glands from time to time, which has been blamed on my working in hospitals and around children in particular.

jenizzle

Hi all!

Another newly diagnosed person here

Initially got blood tests done as I have a B12 deficiency - so I went off that for about 6 months and got tests done. Any symptoms I had (low mood, fogginess, anxiety) were put down to low B12 but that seems to have stabilized now.

Serum Ferritin is low, Free T4 is 11.6, and TSH is 4.57.

Started on 25mg of Eltroxin for the last 5 weeks or so, and my next blood test is on the 29th. If my levels are the same, should I insist on a higher dosage?

I also started taking Galfer but found it very hard on my stomach, so on Spatone now and it's more more gentle. I take Eltroxin in the morning when I wake up (around 6am) and Spatone around noon.

I don't feel much better tbh. Still get very anxious but weight has stabilized a little, thankfully.

I used to do quite a good bit of strength training but I find I get really dizzy doing that now. Still get out for walks etc but it's not the same :rolleyes:

Did any of you make any major diet changes when you were diagnosed? I've lost about 5 stone previously and it's really getting me down that weight was creeping on again.

Wyldwood

Hello Jenizzle and welcome to the madness that's thyroid misery.

Firstly, it's vitally important to get your ferritin up to normal range or you'll feel rotten regardless of thyroid numbers. Low ferritin and thyroid problems go hand in hand and the ferritin needs to be corrected before the thyroid will mend.

25mcg Eltroxin is usually a starting dose so you will probably need an increase, possibly to alternate days i.e. 25 one day & 50 the next.

One tip.. always ask for a printout of your bloods so you can see where in the range you are & for comparison purposes with future results.

There's quite a lot of info on thyroid illness on Mary Shoman's site http://thyroid.about.com/bio/Mary-Shomon-350.htm

Also the thyroid UK site https://healthunlocked.com/thyroiduk

Hope you feel better soon

jenizzle

Thanks a mill, Wyldwood!

I guess I'm just impatient, I want myself sorted out now

I got a printout of the results - spent ages nerding out over all the figures. Calcium, folic acid and vitamin D are also low. My body doesn't seem to be absorbing anything at the moment!

I'll be curious to see what the next set of results will reveal anyway - I started Eltroxin 4 weeks ago. Next test is on the 29th but I'm going away for 3 months at the start of April so whatever I'm prescribed then will have to do me till I get back.

Corruptedmorals

Just sent off my blood results circa diagnosis, and old results taken when I was much younger again...these were borderline as I remembered. Hoping there is some sort of answer contained in them. Definitely clinically hypo but they suspect hyper also, which I have some symptoms of (high heartrate, struggle to maintain weight, borderline high blood pressure, borderline high t4). Anytime I look up being both at the same time (not swinging between as such) it appears to be a transient thing, not long-term. The endo being puzzled is NOT a good sign. I've already been investigated for cardiac issues, POTS and pheochromocytoma and everything has been ruled out so come on thyroid, answers please I also have to confirm Hashis or not, I've always been told I dont have it, but I have positive TPO and my sister has it so I'm puzzled.

RentDayBlues

90% of patients with hashimotos have high tpo.

I can't understand how you have tpo's and not have hashimotos

Corruptedmorals

Yep. My GP has always been great with dosing and so on but I need to grill the endo on that one at the next visit. Now they were never absurdly high and Ive never had goitres...TPO were 110-160 when I was 13 and then 220 when I was diagnosed at 18, normal with this lab is below 100.