Support thread for those with thyroid related disorders

[yeghoulsandlittledevils]

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

[catslave]

Hmm, my endo nurse is really, really annoying and thinks she knows it all. Loads of snide comments about how my T3 is 'bound' to be too high because I don't take levo every time I go in for the blood test (although it isn't). When I was really ill, just the thought of having to deal with her would have me in floods of tears. Now I am better I can just ignore her happily!

I ended up on the porcine thyroid because I had put on a stone and a half and could barely get out of bed - yet the endocrinologist said I had to wait another 6 months before they'd consider me for T3 trials as I ought to get my GH sorted first. By then my T4 count was 22 and yet I had a resting heart rate of 46bpm so was in a fair mess and knew I couldn't go on - bought some Erfa off the internet and then once it worked I persuaded the GP to let me continue.

I'm down in Cornwall and was diagnosed 3 years ago - after a year of getting more and more unwell. I couldn't breastfeed properly so was permanently at the GPs - they just told me I was dehydrated or a bit anaemic , despite the fact that I'd fed two other children very successfully and knew this was very, very odd. Then came the adrenal crashes, hair falling out, skin looking like I was about 92, narcolepsy etc. I finally got them to take me seriously after a year with no periods and when I suggested it might be my pituitary myself... what about you?

I take 17.5-20mg of HC daily, 0.8 - 0.9 of GH depending on if I have or haven't exercised - my (evil) stress test showed I produce only about 10% of the GH I should so my pit is fairly knackered!, 4 x 60mg Erfa tablets (thyroid), Estradiol 1mg, Progesterone 100mg, Testosterone 2mg, DHEA 15mg. The last four come in a troche so are apparently more easily absorbed - I take less of each hormone than when I was on Climagest, yet have higher levels. I get them from Dr Marion Gluck in London.

[littleowl14]

hi sorry to bob on suddenly -

qq:

those who are hypo - do you find if you're not adequately replaced you catch more illnesses and take longer to recover?

And does anyone take extra when poorly? I'm not sure I make any of my own thyroxine now and know of people with thyroidectomies who've been advised to do so.

[l4k]

Catslave, I was diagnosed 5 1/2 years ago.
I had all your symptoms except I still had periods which were irregular and terribly heavy. I had to have a hysterectomy 2 1/2 years ago so it's really hard to judge now but I have been going into the menopause for about a year and a half Confirmed by blood tests, but I also have v strong family history of breast cancer so it's agreed I'll replace as little oestrogen as I can manage with. Do you fine testosterone makes much difference for you? I have wondered if I should be on that too.
Btw, the gp told me I had pnd and gave me Prozac and told me to eat less if I was unhappy with my weight. And he point blank refused to refer me to an endo. Had to do that privately I thought my problem was thyroid.
I lasted about 6 days before I realised my baby was starving being breastfed. He was vomiting just my blood in the end because that's all he was getting. He went from 10lbs to 8 lb 8 oz. then I went against their advise and put him on a bottle and he thrived.
I completely failed the stress test thing too. But for some unknown reason, I seem to be really sensitive to a small amount of GH replacement Don't understand that one, I don't really feel a benefit but because my igf1 numbers are in range they won't give me more.
Oh, and I changed gps, I have a lovely one now.

[l4k]

Catslave, forgot to add I'm 41, how old are you?
And I have 4 dc, between 7 and 18.

[littleowl14]

.... or could I have vit d deficiency? I'm still bf a 17 month old.

[helzapoppin2]

Hello, all! Hypothyroid. I'm on 100mcg of levothyroxine. This was reduced at the beginning of the year from 150mcg, because of my last blood test.
100mcg is the lowest I've ever been on, and I am feeling very tired. I got to a low ebb over Easter when we had guests for a long time, and I feel like I haven't recovered.
The only result I got in January was that my serum TSH level is within normal limits at 3.16 mlU/L. Previously, on 150mcg,it had been 0.08, and my T4 level was 19.7.
I'm thinking of asking to move up to 125mcg, because at the moment I'm definitely not firing on all cylinders!
Any thoughts? All my tests are done at the doctors. I haven't yet seen an endo in this country, moved back from abroad in 2012. Should I?
Has your endo advised any supplements to help with general well being?
Do they run their own blood tests?

[naty1]

Hi, im on levo despite not being diagnosed hypo, my tsh was 3.7 and went down to under 2.5 for ivf but had to wait till after xmas and now after ivf it went to 4. So now im up to 25mg daily (double) to decrease me back under 2.5 but not sure it will do. Another blood test next week.
Ivf clinic want me under 2.5
. I felt really cold (as usual) while doing failed treatment in jan.
Gp was happy to leave me at 4.
Because i wasnt over 4.2 to start with and only went up to 4 now gp refuses to give me medical cert. which is really annoying as it is unlikely to get better so once i stop ivf im tempted to stop levo so my tsh goes up as im sure with none at all it will go over 4.2 as it was 4 on 12.5mg.
Otherwise i will forever be paying which is wrong
I also have pcos so my insulin regulation is not good.
I felt bed before i had DD my tsh was 3 i think before pg but during pg i was really tired, asleep 9-10pm every night

[RockinD]

helza it sounds as if you need at least 125. If you felt good on 150, that might have been the right dose for you. You would need to know the ranges, but if your FT4 and FT3 are within range, then the fact that your TSH is below it is neither here nor there.

If you think about it, it stands to reason that if you are adequately replaced with medication, then there is no need for your pituitary to be trying to stimulate your thyroid. However, this logic is beyond many GPs.

Do keep in mind that your thyroxine will be less effective if your B12, folate, vitamin D and ferritin are less than optimal.

naty your doctors need to look at the NICE guidelines for hypothyroidism in pregnancy and when TTC. Your TSH needs to be below 2. If your TSH is bouncing between 2.5 and 4 you need a full thyroid panel of TSH, FT4, FT3, TgAB and TPO and a doctor who knows what they are doing. I would not want to think that by managing your thyroid badly this lot are setting you up to fail.

cks.nice.org.uk/hypothyroidism#!scenariorecommendation:5

[helzapoppin2]

RockinD, thanks for your reply. I've booked a doctors appointment in about a week and a half. I will ask for a referral to an endo.
150 mcg was too high, I think. I actually felt as if I came down off the ceiling when the dose was lowered.
I guess only a blood test will tell if my levels of those other things are right. At the moment my energy goes up and down, and I've got a real complex about not seeming lazy. Why? It doesn't bother my cats, they can sleep the day away! Even when all around me nod off at the drop of a hat, I feel like I have to keep the tiredness a guilty secret, and I get suspicion if I mention a thyroid problem because hardly anybody knows what a thyroid is or how much difference a non functioning one can make to your life.

[littleowl14]

helz I have been on an alternate day dose of 125 and 150 before which worked well for me as 150 was too high and 125 too low. I took the 'even' dose on an 'even' day (so 150 on 10th April) and the 'odd' dose on an 'odd' day (125 on 11th) iykwim!

now I use a pill box though as I have to take so many pills

[littleowl14]

totally understand how you feel re guilty secret, no one understands and feeling lazy

[littleowl14]

sorry rereading your message I reckon you should be on 125? and then see if you need a little more. a tsh of barely there is fine if you feel fine, drs need to treat people not numbers.

[littleowl14]

(basically I agree with rockin!)

My friend was tested for thyroid as she was struggling but her tsh was 0. something. now that is a healthy thyroid. so why can't we be 0.something? (turned out she was 'just' stressed and depressed). finally my drs are getting this but I've been woefully treated since I was 21 (now 37) and struggled soooo much as a result.

rockin d - can I request that I am tested for all those vits? I'm sure they'd do vit d but the others?
and can you point me in the direction of info on all of that inc how much of the vits is safe to take etc?
I think I naturally crave folates actually as I eat a lot but vit d could definitely be an issue.

[abitPetite]

Hi there I've just started a page on facebook called A bit Petite.it is for the unknown minority that battles against being overly petite. It is designed to help anyone who struggles to put on weight whether it's down to fast metabolism or overactive thyroid.or even if you eat like a horse and still can't gain weight. It would be great if you could check it out. Likes and shares would be even better. I just want everyone to love their bodies regardless of size.
The link is
m.facebook.com/profile.php?id=1445651489013045

Thank you xx

[RockinD]

littleowl Your GP can request all those tests and insist that the lab does them in order to facilitate a diagnosis. Whether your GP is prepared to do this and whether the lab will co-operate is another matter.

If all else fails you can get them done privately. The websites like Thyroid UK and Thyroid Patient Advocacy have discount deals with the major suppliers.

[SuperFlyHigh]

Hi - I was on this under old name (Hello Boys).

Have been told I have under active thyroid and levels were very low last autumn (when diagnosed) not been told by how much and not asked for proper in writing levels.

Have been on 50mg of levothyroxine, put on about half a stone in weight, STILL tired and lethargic. Went up 25mg recently but got shaky, insomnia so went back down to 50mg.

Saw doctor as I think I'd be better on Armour and have private medical care for specialists only (not treatment I don't think) but she was very reluctant to refer me - only said she'd see about my levels in July.

Getting really frustrated don't know what's what. HELP please!

[awaynboilyurheid]

I once saw Dr S a specialist who said most under active pts are under medicated , you probably got shaky because your body was getting used to the thyroxine again having been without it for so long , if you had increased gradually 50 one night 25 the next and did it slowly for a month you might have been ok , 50 isn't that big a dose and sometimes the body reacts to getting thyroxine again as it has been without it or low for so long. Ask to be referred to Endo specialist and ask for print out of blood results unfortunately most of us have to then go online and do research to diagnose ourselves, before you change to Armour it might be better to see how you do on a proper doseage of Thyroxine then if that doesn't help look into switching as it doesn't sound like you are on right levels, it is hugely frustrating and not that its much help but you are not alone. I would not be waiting to July if its low last Autumn its very unlikely to suddenly get better meanwhile you continue to feel ill, go back and push to use your private health care for a consultation.

[SuperFlyHigh]

away thanks for this but I was given 25mg extra for a week (every night) and it gave nasty side effects so what do I do then, as it's 25mg every day?

thanks re the not waiting I will not do that! and will try to see private healthcare!

Thanks so much!

[awaynboilyurheid]

Try taking the extra dose every second night till your body, adjusts and the shakiness goes, then once it eases go up to the full dose its probably just your body adjusting to the new thyroid levels effects its been low for so long that sometimes we have to introduce more thyroxine slowly.Good luck.

[SuperFlyHigh]

away - was just about to PM you until I saw your reply!

thanks for the advice. think I will do this first.

[awaynboilyurheid]

No probs I had the exact same thing happen to me and I'm only passing on advice I was given and it worked for me so here's hoping, it was when I was going from 50 to 75 Levothyroxine had to take it more slowly, and it was just my body reacting to more thyroxine that it had missed for so long on a lot more now tho 175mgs and have just added some T3 20mgs which is making a difference but I'm not balanced yet hoping one day I will eventually get there, not sure when because but its a looong road to get well with this condition for me anyway.

[helzapoppin2]

So, I was at the doctors yesterday and they didn't bat an eyelid about upping my thyroxine from 100mcg to 125mcg. I will report on whether I feel any more awake!

[littleowl14]

good! remember it may take a while. I find it takes about 4 - 6 weeks for my brain to recover. but might be sooner!

[helzapoppin2]

Ok, littleowl, thanks for your reply!

[littleowl14]

I could cry. vit d below 25. is that too low? seeing Dr next week. work nearly strung me up for absence due to endless illness this year. I'm bfing. an active toddler.

I could also cry with relief. though worried re parathyroid now will read that very good website that explains all that when active toddler asleep!!!!