thyroid misery

Corruptedmorals

Unfortunately it's quite slow. You could start to feel a difference within a week or two, but it will be 6-8 weeks before it fully settles. This is why you have to wait ages for a blood test after your dose changes.

I can't really remember myself as my GP put me on such a small dose to begin with.

Irishchick

Corruptedmorals wrote: »

Unfortunately it's quite slow. You could start to feel a difference within a week or two, but it will be 6-8 weeks before it fully settles. This is why you have to wait ages for a blood test after your dose changes.

I can't really remember myself as my GP put me on such a small dose to begin with.

Thanks. Took my second dose this morning. No side effects yet anyway.

Escar

Hi irishchick, are you feeling any better?? I was started on 25 mcg six weeks ago but still have had no improvement. I'm hoping my dose will be increased this week.

Irishchick

Escar wrote: »

Hi irishchick, are you feeling any better?? I was started on 25 mcg six weeks ago but still have had no improvement. I'm hoping my dose will be increased this week.

Tomorrow will mark one week on 50mg. Not
Much change yet to be honest.

Escar

Irishchick wrote: »

Tomorrow will mark one week on 50mg. Not
Much change yet to be honest.

I was told it would take four to six weeks to notice an improvement. What was your TSH?

Irishchick

Escar wrote: »

I was told it would take four to six weeks to notice an improvement. What was your TSH?

It was the lower end of normal. My T4 was 7

njs030

Irishchick wrote: »

It was the lower end of normal. My T4 was 7

Both were within normal but they are treating you anyway based on symptoms? Your doctor is a good one!!

Irishchick

notjustsweet wrote: »

Both were within normal but they are treating you anyway based on symptoms? Your doctor is a good one!!

My Free T4 is not normal. Some labs set the lowest parameter at ten, others 8.

Escar

My T4 was 10.7 and my TSH 11.

njs030

Irishchick wrote: »

My Free T4 is not normal. Some labs set the lowest parameter at ten, others 8.

7 is within those. Anyway you picked me up incorrectly, it is great to have a doctor that will treat based on symptoms rather than numbers

Irishchick

notjustsweet wrote: »

7 is within those. Anyway you picked me up incorrectly, it is great to have a doctor that will treat based on symptoms rather than numbers

I know what you mean. 7 is not within normal range. Depending on what lab you use the lowest your T4 should be is either 10 or 8.

njs030

Irishchick wrote: »

I know what you mean. 7 is not within normal range. Depending on what lab you use the lowest your T4 should be is either 10 or 8.

OK, sorry, I misread your post and what I said was being supportive to someone struggling.

Irishchick

notjustsweet wrote: »

OK, sorry, I misread your post and what I said was being supportive to someone struggling.

I know I didn't mean it in a negative way

qo2cj1dsne8y4k

After my absolute disaster last month
(T4 - 3.1, TSH - 347)

I think I'm finally getting sorted but I am disgusted at how badly I've been treated by the hospital and doctors. There is no endocronology unit in my local hospital. I've been very unwell recently and after some blood tests my GP discovered what was wrong and referred me immediately to hospital. (The one with the endocronology unit) which was a 45 min drive from where I live.

I got such a fright when the dr called me to tell me I needed to go straight there that I forgot to ask her if I went to a unit, the main hospital or through a+e. Apparently she'd phoned ahead and they were expecting me.

When I called the hospital in question to find out where do I go the nurse said "to your nearest hospital. Why would you come here? Go to X hospital." I explained they didn't have endocronology and she said it didn't matter.

So I went to my own local hospital, who were fantastic. The medical dr in a+e took such good care of me. She told me there was absolutely nothing she could do, this was outside her area of expertise and she was liasing with the registrar on what to do with me. They eventually decided to double my meds, and came down and explained that I needed to go back to Dr X. I asked who that was and she said "your endocronologist". I told her I never have been seen by anyone except my GP and she was absolutely horrified. She wrote in my letter that she was discharging me into the care of my GP and recommended immediate referral to the endocronologist.

I went in that morning I was discharged to my GP with the hospital letter. She brought me straight in and said I needed to go to the further (endo) hospital that day, she's a letter ready for me from yesterday and said she felt it was too urgent for me to be put on a waiting list and that she wanted endocronology to see me that day as she'd never seen results like that and thought the lab had made a mistake.

So off I went to this hospital with my dr letter explaining she wanted me seen, had my results in it, had profound hypothyroidism and myxodema as the issues and all they had to do was read the letter. I don't even understand this illness and even I understood it wasn't good news.

The a+e dr was so dismissive. He took bloods, tested me for diabetes and said "you're walking, you're talking and you're alert. You're fine. You don't need to see endocronology, go back to your dr in 6 weeks and have your bloods repeated".

So I left, a bit like wtf? Why did both other Drs I've seen in the past 24 hours seem worried and it wasn't even a big deal. I went home and decided to take the next day off work after two hospital visits I was exausted. Woke up the next morning to a lot of missed calls and some voicemails asking me to contact the hospital (endocronology one) ASAP. I rang back and got speaking to the nurse manager in a and e. "Your results came back from the lab. You need to come back in, you poor thing you must be feeling dreadful. Bring a bag. we're expecting you, you won't be kept waiting."

Sat around all day, this time it was like they knew they made a mistake. They did another rare test to test for anti bodies or something. Took more blood and that was it. That evening I was called in by a young medical dr who said "you can go home. you can come back in a month (I think it was a month) to see the endocronologist as outpatients. Here's the blood form you need filled out". At that stage I had enough, my mil was with me, we spoke to the nurse manager, the medical registrar and all said the same thing. Endocronology have reviewed your chart and are happy to discharge you with a follow up appt. my mil said she'd take me home but if anything happened to me it was on them. Then the registrar decided to admit me and I was seen by the medical team the next am. They said to me in 12 days time I'll be back as an urgent case and that I'll be seen by an endocronologist then. 12 days. Bloods to be done in 10 days.

8 days pass and I've no appt. I ring to see when my appt was, my chart had not been reviewed and I couldn't be given a date until it was. Spoke to my GP about being referred privately and she said there was no point, she told me they told her in my discharge letter it was 2 months (not 12 days) and eventually when they called me back from the endo unit, I was told I didn't need to be seen until August.

My GP decided to refer me to a Dublin hospital but warned me not to tell mullingar to feck off just yet as Dublin could have a waiting list for 18 months.

Recieved a call this morning from Dublin saying they got my dr letter, the endocronologist was concerned with my levels and wanted to see me ASAP. I have an appt for next week.

I cannot believe how awful the original hospital has treated me.

Corruptedmorals

I can't get over your TSH! Your treatment sounds like a joke, shocking stuff but I'm not surprised as I work in outpatients and it's a system struggling to cope. Your TSH, wow. The worst I've ever seen was 150 and the lab and consultant all threw a fit over it. The worst I've ever experienced is about 12 and I cant handle it at about 8/9. I can't even begin to imagine yours.

Glad to hear it's being treated seriously now, although a bit of a trek for you. I go to St James which isnt one of 'the' endo hospitals but I love my consultant. Had to go private to beat the waiting list though.

qo2cj1dsne8y4k

I'm going to be seeing dr phelan. Has anyone any experience with her? I'm seriously impressed with James's so far, one week to wait.

See for ages I felt like I was on the brink of passing out. That horrible head swirling, nauseous feeling, spots in my eyes. I'm just relieved that I now know what it is

yoga nation

Change your endocrinologist - some aren't as good at their jobs as others.... Did they test adrenals?

qo2cj1dsne8y4k

Today was my very first consultation with an endocronology consultant. They're testing every single thing you can think of. Diabetes, pcos, as well as a lot of things I didn't understand.

She explained to me how they'll need to play around with my dose of meds. The worst part was her explaining to me about being very careful not to become pregnant for the foreseeable future. Now, at the moment we have no plans, but just for arguements sake I said to her, what would happen if I discovered I was pregnant tomorrow? She said I need to be extra extra careful not to let it happen as the baby's brain would not develop and if the pregnancy did go ahead then obviously it wouldn't be a happy ending/healthy baby.

Although I've no plans on having a baby in the near future, I don't know why, but that's knocked me for 6. I had no idea it would have effects like that, or that when/if we do decide to have babies, it'll need to be planned and medication altered. You know, when I was first diagnosed with this condition I didn't take it that seriously, thought it was on par with needing b12 shots or iron tablets.

Feel very sad after that appointment today

RentDayBlues

LexieOnRale, the unplanned pregnancy and side effects only are an issue as long as your thyroid is out of whack, once they have it stable then you can have those unplanned pregnancies

I worried so much about being able to get pregnant and maintain the pregnancy, but once your levels are stable then it shouldn't affect your chances. I have 2 very healthy toddlers, neither of whom have thyroid issues. My levels were tested all through the pregnancies and once you pass the 16 week mark the foetus' thyroid kicks in and they no longer rely on yours.

The endo is correct to test for all autoimmune conditions as they do tend to travel in groups. Glad you're finally getting sorted

CathyMoran

I have 2 children and I have had thyroid issues since I was 3 and other medical conditions - they run in my family but my daddy still managed to have me.

jozi

Is being low on energy a side effect of under active thyroid?

I had my bloods done again not long ago and it showed my thyroid as being slightly under active.

The last couple of weeks I'm just tired from the moment I get up. I haven't had a proper relaxing weekend (one where I'm not up early) for a few weeks nite which may attribute to this feeling but I saying that I don't sleep terribly long either

Emme

jozi wrote: »

Is being low on energy a side effect of under active thyroid?

I had my bloods done again not long ago and it showed my thyroid as being slightly under active.

The last couple of weeks I'm just tired from the moment I get up. I haven't had a proper relaxing weekend (one where I'm not up early) for a few weeks nite which may attribute to this feeling but I saying that I don't sleep terribly long either

Low energy is one of the main signs of underactive thyroid. Get your bloods done again. You may need some medication but an endocrinologist or doctor will confirm this.

njs030

jozi wrote: »

Is being low on energy a side effect of under active thyroid?

I had my bloods done again not long ago and it showed my thyroid as being slightly under active.

The last couple of weeks I'm just tired from the moment I get up. I haven't had a proper relaxing weekend (one where I'm not up early) for a few weeks nite which may attribute to this feeling but I saying that I don't sleep terribly long either

What do you mean by slightly underactive? Different doctors seem to have different ideas of what is "normal" so your doctors slightly could be another doctors idea of needing medication. Maybe check what it actually was and get bloods done again too so you know exactly what you're dealing with.

As said above lacking in energy is a common sign though if you're living a very hectic life it's normal enough to be tired but bring it to your doctors attention as well to be on the safe side.

jozi

I had them done about 4 weeks ago. I can't remember the results but I've asked for a copy.

I get your point about normal being different depending on who you speak to. I was recommended this gp through here after asking about it in the thread, o I believe he had a thyroid problem also.

njs030

jozi wrote: »

I had them done about 4 weeks ago. I can't remember the results but I've asked for a copy.

I get your point about normal being different depending on who you speak to. I was recommended this gp through here after asking about it in the thread, o I believe he had a thyroid problem also.

I keep a little chart on my phone with dates of blood tests and what my levels were so I won't forget!

jozi

That's something I've been meaning to do! Any apps to keep track

Could anyone punt me in the right direction for some good sites to educate myself a little bit more and maybe more specifically, which foods to eat and avoid as I'd like to do more before the doctor or anyone suggests medicine

Corruptedmorals

I take photos of my labs, the real deal gets sucked into my hospital chart. I used to write them down as well.

Does anyone find they're more prone to things like colds when thyroid results aren't ideal? Mine started to slide 2ish years ago...it's still relatively stable but t4 is too high and keeps climbing and TSH keeps lowering every time, still normal though...t4 is not. I've had a cold for a solid month and while it's almost gone, the cough won't leave me alone. I definitely get afflicted with colds more than I did, but the timing also coincides with starting to work in hospitals so it's hard to know.

inocybe

Corruptedmorals wrote: »

I take photos of my labs, the real deal gets sucked into my hospital chart. I used to write them down as well.

Does anyone find they're more prone to things like colds when thyroid results aren't ideal? Mine started to slide 2ish years ago...it's still relatively stable but t4 is too high and keeps climbing and TSH keeps lowering every time, still normal though...t4 is not. I've had a cold for a solid month and while it's almost gone, the cough won't leave me alone. I definitely get afflicted with colds more than I did, but the timing also coincides with starting to work in hospitals so it's hard to know.

I've been getting UTIs and other infections since going under active from meds. Starting to wonder if there's a link.

jozi

Getting bloods done again tomorrow and spoke with doctor also. Don't exactly Remer what he said but anti bodies are fine ad was everything else the last time except a slow thyroid (he mentioned a value of 7 when normal is .5 to 4 I think? )

As I said I my previous post, feeling very low on energy lately. Today at work around 3ish I felt like I could just go to sleep, would this be thyroid or lack of sleep? Anyway will have a chat with the doctor but really want to stay start feeling normal again instead of feeling like I've no energy

qo2cj1dsne8y4k

Had my bloods repeated.
TSH is down to 49 (thank god!)
Free t4 is up to 5.8 (from 3.1)

Tested positive for hashimoto in the anti bodies test
Negative for diabetes and coeliac, they tested for pcos too and think that came back neg but my prolactin levels are 750. Guess that means at the minute I'll be unable to conceive anyway which will be for the best when they're saying it's dangerous anyway.

Despite in drop of tsh, I'm exausted. No energy. They're raising my meds to 150 mcg now.