If you have an underactive thyroid...can I pick your brains?

[MrsJonesAndMe]

How long have you been diagnosed? Do you take Levo? Are your symptoms under control? Anything else you do to help?

I've had issues for ages before the GP agreed to medicate almost exactly a year ago. I'm on 50mg and after initially feeling better, I didn't by Christmas. Had bloods done and was told it was "fine" and now here we are in July and I'm utterly exhausted...but how much is thyroid and how much is the fact that I'm working and home schooling and in the midst of a stressful situation trying to keep all the plates spinning?

Just musing really - sometimes it's just useful to hear from others!

I have hasimotos-

Hypothyroidism is a problem with your thyroid gland; Hashimoto’s is a problem with your immune system. In Hashimoto’s– as in all autoimmune diseases– the immune system gets confused and mistakenly attacks a part of your own body.

I hate having hasimotos currently pregnant and scared every moment for baby .

I got diagnosed postnatally, almost 5 yrs ago, and all the women in my family are underactive. From other people I know, I’ve had a comparatively easy time, and it’s seems that people who had issues for ages before being diagnosed seem to have more ongoing problems? That’s a v unscientific personal study! But I was caught as it was starting to go, and I’ve never felt aware of it, just take my meds and all fine. I think it’s easy to hope that it’s causing tiredness and weight gain when it’s just lifestyle changes needed (for me).

Your immune system attacking the thyroid is Hasimotos yes.
I have very weird things going on with my thyroid.
August 2018 my Free T4 ended up under the lowest it should be. Got worse when re-tested 3-4 months later. But my TSH wasn't spiking. Should have been done as an urgent referral to endocrinology but wasn't (fucking GPs), as this suggests central hypothyroidism.
Saw an endocrinologist, begged them to start giving me levothyroxine, they refused, did more bloods, which showed normal thyroid issues.
Then they did more bloods, everything had gone back to where it 'should' be.
Thought that must have been due to a medicine I was on at the time.
Had some blood tests done in Feb, which I recently got around to asking for print outs for.
My Free T4 had dropped again, not as much as last time but I am incensed that they didn't pick it up in Feb.
Have to get more bloods done but having a hell of a time arranging this due to fricking covid.
Has anyone else had a thyroid problem that was being shown by Free T4 levels and not TSH?

Ps I’ve also gotten pregnant easily and no issues. Hashimotos here too. Was so nervous at start of last pregnancy but was fine and had a few adjustments of doses through it.

@Turnedouttoes this sounds so similar to me. Totally exhausted, weight gain and I would feel so weak and faint I would have to lay down (Iv become scared to leave the house in case I feel like this in public) I was seriously convinced I was pregnant, I took about 6 tests over the space of 2 months, all negative, but I didn't believe the tests. My body felt so different, especially the bloating!
Can I ask, did you have any abdominal pain/aches. I have this constantly, sometimes tingling/numb feeling too. Mostly at the top of my stomach and usually on the right side, I have not heard of anyone else experiencing this with UAT so I'm confused if this is related or if it could be something else.

I am hypo diagnosed during pregnancy 10 years ago. Very undereducated and poorly managed by my GP, but I asked for a ref to an endo consultant who increased meds so my TSH is now around 1. He diagnosed coeliac too as the too often go together.
I've had 6 miscarriages. My weight has been stable. I'm prone to brain fog and lethargy. I supplement with multi bits. I have cold hands and feet.

My TSH has risen to 5 and I now have a high T4, but my consultant doesn’t want to do anything about it. I’ve been so tired. I’m only on 75mg.

Lots of ups and downs ladies to you all.

See the diet thing is interesting as a lot of stuff online talks about cutting gluten, lactose and things like corn and peanuts. My GP just scoffed when I asked.

For those with weight issues, I managed to lose 30lbs once on the Levo through eating carefully rather than trying to keep myself going by eating sugar, sugar and more sugar and IF. I've gained under the stress of lockdown to the tune of about half a stone, but BMI still inside normal range so I can live with that.

Such a difficult disease!

It took me years to get diagnosed in the UK.

I was first diagnosed while we lived in Canada, as they diagnose on symptoms rather than bloods. I felt much better on thyroxine but we moved back to the UK a few months later and GP refused to prescribe it as they insisted on bloods first and mine came back normal! Took 12 more years before my TSH levels (16) were finally bad enough for me to get thyroxine again. I reckon I’d been hypo for at least 20 years by then since my 1st pregnancy.

My latest TSH was 2.39 (been on Levo for 4 years now) and I’ve still got a lot of symptoms with skin and hair, anxiety, etc. . It’s taken me 2 years to loose 4 stone through extreme exercise and having to very careful with my diet. I still have another 3 to go and it’s so difficult. I’ve read before that TSH should be under 1 to feel well.

Can anyone who’s medicated to get TSH under 1 tell me how they got their GP to agree to it because mine won’t up my prescription which is currently 100mg?

I've been on 125mcg since having dd 6 years ago.100mcg before that.Totally fine no side effects.

I have my results back today
TSH 7, T4 15. They've increased my levo to a whopping... 50

GP,s are not very good at diagnosing an under active thyroid. I think they get about 20 minutes training. My GP was not good. Told me to take up Yoga and if I could have got down on the floor and then got back up I would have tried it. I gained 3 stone before I was diagnosed and it took 8 years of anxiety, weight gain, excema on my hands, alopecia (lost all the hair on one side of my head) and nasty joint pain. I ended up going to a private GP: who has now unfortunately died.

I now buy my Levothyroxine from America because my GP refuses to diagnose me. Haven't had a blood test for years.

@RhapsodyandAshe

My T4 level has been slowly dropping to the bottom of the range, now at 10.4. TSH fluctuates from around 2-5. After a lot of persuasion my GP trialed me on 25mg of Levo, which being such a tiny dose, did nothing. It’s very frustrating. Hypothyroidism runs in my family.

I really hope you manage to get somewhere.

diagnosed 2 years ago, i take 50mcg a day.

i have a giant substernal goitre which means my thyroid needs to come out. it causes sleep apnoea and i’m constantly knackered. i have psoriatic arthritis as well so my immune system is borked.

am fat, tired and can’t breathe if i lie on my back. isn’t life grand.

@Anotherloverholeinyohead I’m on 175mcg of Levo, weight gain has been a problem for me, I hardly eat anything and exercise daily but I’m always within 17/18 stone. It pisses me off because I see skinny people eating absolutely everything and gain nothin, I just have to look At a pizza and I gain weight.

Please do visit Health Unlocked's Thyriod forum as mentioned above.

Apparently, you will often feel better at first on 50mg as your T4 is topped up. Problem is you then make less T4 yourself, so levels actually drop again. At this point you need a dose increase.

T4 and T3 are far more indicative of your thyroid health than TSH.

The forum is excellent.

Will do, thanks

The BTA say that 25% of people tested for the 'normal' range are hypo and untreated.

Various books from the US suggest that the correct dose is 1mcg for every pound of normal weight.

There's a brilliant book called, I think, About thyroid written by a Dr and his wife who's a nurse and hypo.

I take only t3 as my body can't do the t4 - t3 conversion. Only costs 5€/month, so thank goodness I'm in France as it's virtually impossible to get it prescribed in the UK now due to massive cost increases.

I put on 60kg, doubling my weight before I was finally diagnosed but was given no help at all to lose it.

My thyroid was knackered in a whiplash injury that broke spines on my cervical vertebrae. In the US when that happens they do a full thyroid panel so that the person has their own 'normal' range that can be used for comparison. Before leaving the UK my GP had given me blood test request envelopes and let me fill them in myself so I always has t3, t4, free t3 and free t4 and tsh.

@Ltdannygreen - exactly the same here! It really pisses me off when people can eat quite freely and just need to "loose a bit for the summer".

Last time I went for a blood test I was told I needed to loose the weight because it has started to affect my lower back. I was thinking I have been trying for sixteen years so help me|!!! I had two appointments with the dietician who looked at my food diary which covered a month. They said there was nothing much they could add to make my diet any better and was impressed by the fruit/veg and water intake.

Ill keep plugging away because I don't want to believe I will be this size forever!

Hi, I got diagnosed after my DC2. I felt so tired and kept blacking out. The doctor said my thyroid just reacted badly to the shock of pregnancy! I'm on 75g now. It felt like mentally dragging myself through treacle.
I was refered to the endocrinologist and over the years with them they have me lots of advice which the GP didn't know:
-Take Levo first thing on an empty stomach and don't eat for an hour (sometimes im in a rush and eat straight after)

• it's linked to anemia but iron tablets stop Levi being absorbed so you have to take iron tablets at least 4hours after Levo (I take iron after dinner)
• taking iodine supplements can sometimes make it worse as your thyroid can be so out of "habit" with how to handle it, it just causes problems
• if you suspect you're pregnant you should up by 25mg a day as early as possible (please check with doctor 1st!) I found this out after having a miscarriage .
• soya and veg like cabbage/ brussels etc can affect it, but I can't remember how
• caffeine affects levo being absorbed. My energy levels really bounced back when I stopped taking it with coffee! I only drink decaf in the afternoons now.
• your thyroid sort of resets in spring and autumn, but at that point (10 years ago) they hadn't really found out why. I know my energy levels drop around these times, but don't know how well founded this is.

That's all I can remember for now!
Recently had a pregnancy panic and the doctor agreed 're the extra 25mg even though I hadn't had a BFP.

I usually take levo first thing, workout, shower then breakfast, herbal iron tablets at dinner. I know if I'm stressed or go to bed late that my tiredness increases way more than it should do, so I'm working on keeping to a routine of getting up/ sleeping at reasonable times and it's really helped.
I am overweight but gradually coming off (1lb a week!) by just making healthy changes.
Hope things work out with your thyroid x

Forgot to add...
The doctors are just happy that ranges are in " normal" but it might not be normal for you. You might be in the upper levels of their range so aren't being given the right dose. At this point just worth telling the doctor how tired you are etc.

Yes - Hashimotos is autoimmune. One blood test measures antibodies which are raised when it is an autoimmune response. So if the doctor said your immune system is attacking your thyroid, it is Hashimotos.

I had the antibody test done before diagnosis but not had it since. The numbers for in range (ie not an autoimmune thing) were something like 0-10, and my actual result was something like 600.

I was diagnosed at 17 after a year of pushing for it to be tested apparently you don't get it under 40 was put on a tiny dose and was in normal range just. I never felt properly right again until I got pregnant (9 years later) and requested to be immediately tested. Went it quoting nice guidelines about immediate upping dose. Dr didn't know anything about it but did agree to blood test. The same afternoon he rang me and said he'd looked it up and there was a prescription ready for me to collect.

Ever since I haven't been reduced from my pregnancy does (4 years now) which was 4 time the amount I'd survived on before. I'm still in the normal range just the other end.

My dad does, he takes levo and exercises ALOT he never used to but has found its the best way to manage the weight gain and boost his energy so he isn't shattered all the time.

I was diagnosed with graves at 13 and had a sub total thyroidectomy at 17. Removed 98% so became very under active. Annual blood tests and ended up on 250mg of thyroxine. All fine until it isn't. And when it isn't you feel awful. I'm sorry to read so many of you had miscarriages. That isn't my experience. I have 2 children born late 30's. Pregnancy affected my thyroid dramatically. After my first it was all over the place. My readings showed slight over replacement but the reality was my symptoms were hypo. I was lucky and got a sympathetic GP who took me seriously and I was referred to the hospital. I am now also on T3. Totally game changer . Monitored throughout 2nd pregnancy