Hypothyroidism

[Jw1]

My friend used to be 8 stone all her life she's never been over 8 stone,since she was diagnosed with hypothyroidism she's piled on the weight,, she's now apx 14 stone,, she's loosing her hair,eye brows have fallen out completely,,she is so depressed,she is constantly in pain it hurts me seeing her in such pain,I don't know what to do or say to cheer her up or offer any advice on her health condition,,might anyone have any advice which might help her or advice for me on how to cope with someone you love with hypothyroidism

Hi, I'm so sorry for your friend. Hypo is hard to deal with until they get her meds right and under control. Is she on thyroxine and are the levels right? I also had to get T3 added post kids as the depression and mental health side was really challenging. It's really hard to lose weight but impossible without the meds being right. Where is she at with all of that?

I was diagnosed with a very underactive thyroid just over 2 years ago, and gained half a stone (went from 8st 7 to 9st) before diagnosis.

Once I was on the right dosage of Levothyroxine (which took about a year) the weight was easier to lose.

The pain and the hair loss also calmed right down.

Hi Ty for your response very helpful,,over here in the UK ,, unfortunately those with hypothyroidism are not prescribed T3/T4...They are only prescribed...Levothythoxine and a yearly blood test, iconic due to the test results not being given out correctly,my friend seen a consultant in a different medical field than thyroidism.she was told that her thyroid levels were on the floor..The consultant was furious that my friend wasn't told anything about her blood test results, once the consultant new how low her thyroid levels were she immediately doubled her dose, The consultant only stumbled across this by accident if she wouldn't looked at her last blood test results then my friend nor the consultant wouldn't of known any of this,,The first question the consultant asked my friend was ask how on earth have you been able to get out of bed?To which replayed she hasn't!so she was very grateful for this consultant who sorted her thyroid meds out after phoning her GP,,my friend is still suffering with pain very tired . Swelling hands and feet,,Today trying to contact a GP as now become so stressful,hanging on the phone waiting in a quee some times waiting upto a hour then once you've got a answer the receptionist says sorry theres no more E.consuilts today phone back tomorrow.,The E consultant system only gives you a doctor's phone call back ,,UK NHS is so under strain,speaking to a doctor nevermind seeing a doctor due to this system many patients especially with long term sickness are becoming worse.just like my friend...

My friend was taking 50 mcg..The Doctor increased it to 100mcg of Levothythoxine,,my friend hair loss is now coming out in chunks,, weight gain nearly doubled from 8 stone to apx 14...her depression is off the scale,The last blood test she had ,The results came back as in range,,The UK don't prescribe the proper blood test they don't test T4 nor T 3...which are the main ones so it's difficult to know what range is correct,Everyone is different ,,my friend looks like she's pregnant it hurts seeing her suffering,,Do you suffer with being hot all of the time?I have noticed this with my friend,I can feel the heat bouncing off her,,I think her Levothythoxine levels are okay but other meds are needed unfortunately here in UK this is the only medicine that the NHS doctor's prescibe those with hypothyroidism many thanks for your response if you do know of any other meds or supplements which might help her thyroid levels please reply again glad to hear your hypothyroidism is now under control,,,

I’m on 150mg Levothyroxine after being diagnosed many years ago.

It is effective taken longterm but I wonder whether something else is going on health-wise? Even though my thyroid is barely functioning, I’ve never had such extreme symptoms as
hers. I hope she manages to get a GP’s appointment very soon, they’ll have to take notice of such extreme symptoms. 💐

How long has she been like this

I am on T4 and and T4 in the Uk. Thyroxine snd liothyronine. I think they are the names. NHS.
She sounds really poorly, demand a referral. I did and my GP listened and I -' under a consultant (endocrine)

And T3 that was meant to say

Ofcourse they test T3 and T4 in the UK

I am on 200mg of levothyroxine

If your friends levels are stable on 100mg thats good but sounds like she needs some more blood tests for other things

Folic Acid and Vitamin D for starters

It could be worth looking at a gluten and dairy free diet - do some research on this. Most with hashimotos need to change diet. Take magnesium also but a good brand x

Ofcourse they test T3 and T4 in the UK

They very often don't. If your TSH is 'in range' (and this is a large range!) then labs don't test FT4 nor FT3. If your TSH is out of range (too low or too high) then FT4 will be tested. If that is 'in range' then FT3 will not be tested. The latter is only tested if FT4 is also out of range. It's mind-bogglingly terrible for diagnosis.

TSH should be around 1.0. To find out the other values and the essential thing to know, has she got raised antibodies to thyroid peroxidase (TPO) and thyroglobulin (TG) in order to determine if she has autoimmunity, a full panel of TSH, FT4, FT3, TPO Ab and TG Ab needs to be done. You can buy a finger prick test kit from a number of online companies, Medichecks is one of them. That way she will have the full information she needs.

I developed hypothyroidism at 60 yrs old and gained 16 kg. I was constantly deathly tired, thinning hair, brittle nails, constipation, dry skin, puffy round the eyes, brain fog. I was put on only 25 mcg levothyroxine which did very little. 50 mcg didn't do much either. I decided to go gluten free and the weight slowly, slowly came off over around 18 months. I self-sourced T3 and began taking that instead of levothyroxine. I am better than I was, certainly my brain fog has gone, but I am not what I would consider 'well'. I also now take a number of supplements as many people with hypothyroidism are Vit B12, Vit D, folate and ferritin deficient. All those need testing.

Thyroid disease is complex and needs to be properly treated as you end up just barely making it through each day and your life just passes you by. Most doctors know surprisingly little about it. It's a long path to finding the right dosage and recovery can be slow if there are other deficiencies. Plus knowing whether autoimmunity exists is very important as other autoimmune diseases can develop later.

Yes will get her there to GP asp,,,her doctor told her that is the only meds they do over in UK,,I myself will look into the T4...I also think there's something else going on,,There's a homeless shelter we're there's a doctor am hoping she will go with me on Friday this week,,I have noticed lately that she's having difficulty in standing,,I will keep you all posted,many thanks for all of your replies it's a great help it helps me also to under🕧stand the illness a little more so your replies are very appreciated 👺
👺

Thyroid care in general is very poor in the NHS
Your friend should push for a referral for an endo, and for regular checkups (every 3 months) until her medication is in range.

Sorry to hear about all the symptoms - it is terrrible, ive been there.... especially the hair/ eyebrows falling out, mental health and weight gain. It takes a long time to feel "normal" again, took me 2 years to feel ok again and level out my medication.

I have mine tested every few months

@CrunchyCarrot That’s interesting about your gluten intolerance. Even though my hypo is well controlled, I have noticed that my digestion is far more sensitive and I’ve been wondering whether to try cutting out certain foods. I used to be able to eat anything but not anymore. Thanks for sharing your experience.

This is what I was wondering?

I'm on 100mg per day and I've never been unable to get out of bed.

My story is like your friends. I was slightly overweight and without any reason I put on 4 stones, 25kg, in a few months. My GP gave me a diet sheet, you couldn't make it up. I moved and registered with a new GP, by now 5 stone or 30kg heavier, who did a blood test.
It isn't just about weight, an under active thyroid can make you feel cold and exhausted, your hair and nails stop growing, your skin is rubbish and depression and constipation are common.
It has taken me 35 years to lose the weight.
Get your friend to her GP and get them to check her levels until her numbers are normal. I do better with more thyroxine than less
Good luck

I am hypothyroid too, I was fit, strong, and slim, couldnt keep the weight on and couldn't stop moving. Then suddenly I was tired all the time and getting odd symptoms. After 2 years of going to the GP and being told I was just getting older (in my early 30s), I started to gain weight super fast, 4st in 4 months eating nothing but salad without dressing. 2 Friends suggested getting a thyroid test, GP told me I could waste my time if I wanted and gave me a form. A couple of hours after the blood test I got a message from the GP saying it was urgent that I came in. Then found out the the NHS have no idea what to do with thyroid patients and levothyroxine doesn't suit me, one of it's side effects can be weight gain. hurrah! But they won't give me a prescription for me to try a natural source of thyroxine like Armour even though I would be paying full whack for it 😡

After a lot of issues with GP I asked to see our local Endocrine consultant as a PP suggested above. He told me that all thyroid patients should see the local consultant and was horrified to find it took 10 years for me to get an appointment with him because the GPs wouldn't refer. He upped the dose and told me the GPs will fiddle with the dosage all the time if I let them, he was right there.

My suggestion is like the PP who suggested her getting a second opinion from the endo consultant, they will run a barrage of tests which the GPs will not. Your friend is entitled to an appointment with one and she may prefer to see the consultant several times, the GPs should refer her any time she asks.

There are suppliments that Thyroid UK and other supposedly knowledgable sources will tell you are rubbish but then they also used to say that eating goitrogenic foods like soya and cabbage is fine until everyone else in the world said it wasn't. I recently started taking NAC for my liver but it's had quite a positive effect on me so far in many things not least my hair and skin being so much better. I'm considering Ashwaganda, there are loads of suppliments that will help with the symptoms your friend has but we are all different so when your friend is on a better dose of thyroxine and is more settled then she can look at her symptoms and see what can help her get through the day. Don't expect to go back to the old person with treatment, I don't recognise myself physically or mentally, it's not all bad though, although I'm still not a relaxing person to be around, I'm way more relaxed and sedentary than I was

Oh and for some history about thyroid treatment in the western world, have a look at Ray Peat, he has some interesting snippets. Might not be immediately helpful though so that one is at your leisure!

Lastly, you may already know this but in case you don't, thyroxine is one of the scripts that you can get a free prescription card for. Whatever anyones opinion is on the fairness of that, it's available if your friend wants to apply.

Tell her to get on the thyroid U.K. forum on Health Unlocked.

If she's hypo and on meds her FT4 and FT3 need to be toward the higher end of the reference ranges, not just "in range"

Some people need T3 as well as T4 and you won't get that prescribed by a GP in the U.K.

It's important she checks her vitamin levels. Hypothyroidism is associated with vitamin deficiencies and these can cause very similar symptoms and also affected body's ability to convert T4 to T3. These should be optimal bout just in range.

She'll get great advice on all of the above on the Thyroid UK forum on Health Unlocked.

I see a fantastic private endo in the UK if thats an affordable option for her. PM me if you'd like his name.

I would suggest that your friend pays for a private test to obtain T3&T4 levels (together with a full vitamin count ). My GP was happy to take these results into consideration when starting my medication . If she needs further support she should join the Healthunlocked website ( and the sub group Hypothyroidism). If she posts her blood results and her symptoms in this group there are a number of very informative people on the website who will help her to present her case to her GP.
I hope she gets some answers, it’s a miserable debilitating disease if left untreated / incorrectly treated .

it’s a miserable debilitating disease if left untreated / incorrectly treated

If not treated at all it will eventually give you myxodema and can kill you. Also affects the heart adversely. It's a whole body illness. One would hope no-one these days would be left untreated to the point of getting so sick.

I have an under active thyroid (hashimoto) Has your friend had a test to see if she has hashimoto? This is basically an autoimmune condition where you body attacks your thyroid.

Levothyroxine alone doesn't work for me. I have in the past tried levo only to prove to my drs they it doesn't work alone for me. You need T3 as well as T4. Levo only gives T4 and your body is meant to covert the T4 to T3 in the liver. But this doesn't happen for a lot of people so they don't get the T3 they need.

In the past I've bought Amour and natural thyroid meds from abroad. This made me feel normal again, however still struggled to lose weight. It got very expensive though so I stopped this. I tried to get T3 on the NHS but they don't prescribe it anymore. I found a supplier in turkey that I buy from. They sell T3 over the counter in Turkey. My Dr knows this and is fine with it. I use Triomel.

Hope your friend starts feeling better soon. Does the levo not work for her at all? I don't think she will ever get the natural stuff on the NHS. Don't think anyone manages to get it prescribed even privately. Get onto stop the thyroid madness or thyroid UK to find out how to buy it privately.

Many thanks some real good advice,it helps me to understand the illness,,I been online and.brought her some hypothyroidism one with iodine T3 and another one which is vitamins which can help her immune system,,By the sounds of some of the advice she needs the hashimoto' test,, she's low sleeping all the time then she gets manic,, which really annoys me,,I should be more understanding but it's difficult for both of us,living under one roof in a small flat cant swing a cat excuse the putt to cat lovers,lol,,her support. Worker is trying to make a doctor's appointment and trying to get her booked in for a blood test,,The E consultant, system doesn't work,phone the doctors and your like 60th inline then you just give up if you do wait it's to late there all booked up try tomorrow it's a nightmare so hopefully her support worker can work some magic,,I will keep you all informed of any progress or any other questions I might have,,I really appreciate your replies,I myself didn't realise how serious her condition,I need to be more understanding in future you know us men we never listen lol.i am now.

Your friend should NOT take any supplements that could alter her thyroid lab panel results before she is properly diagnosed! I'm not sure what the 'iodine T3' supplement is that you are referring to, but it's not a good idea to start taking something at this point. Get a proper diagnosis first. I know it's difficult but it's important to have baseline results that are accurate.

Thank you,I will put them
away there coming from USA,, hopefully she will have had another blood test before they arrive and possibly spoke to her GP,,prying her support worker is learning magic, 😂 it really is becoming a chronic headache phoning GP, we both are on arr phones as I type,on hold ,,27th in queue,