Hypothyroidism

[bumpsadaisy11]

My daughter was diagnosed with Hypothyroidism in May of last year.

Her TSH was originally 12.9 & was put on 25mg of Levothyroxine, this was quickly increased to 50mg, which is what she is on now.

Her TSH is now within normal limits (1.65) but her symptoms are still almost crippling her & have not shown any sign of improvement.

When she gets home from college, she spends her evening wrapped in several blankets, leaning up against her radiator, as she is cold to the bone & can't get warm.

She is constantly exhausted all of the time. We spoke to the Dr's but they aren't interested in referring her to an endocrinologist, as her TSH are within normal limits!

Any advice would be very much appreciated, as it makes me so sad to see my DD suffering so much

I was going to agree with @SeaToSki till I saw the Tsh!

Might be worth seeing a different dr who is willing to maximise the thyroxine levels. It does explain this in the Toft book I've linked.

You have a right to be referred to an endo, but they'll tell the gp to do the below.

By all means pay to see a private one, however I do think by getting a good gp on board you don't need to. The private one will refer you back to gp care after basically making sure Tsh is optimal - 0.3-1.

I'm actually ok around 0.8-1; some are better below 0.3 - it's recognised by endos that some people need complete suppression.

They may test t4 and t3 but they will be low with a Tsh of nearly 4.

It's only worth perusing it further if:

Her Tsh is say 0.5,
ferritin good,
vit d good,
b12 good (folate too)
and it's been several months and she's STILL very unwell.

She will have to slowly build up to normal activity too - gentle exercise when she's feeling better. Won't be able to yet.

Sorry for essay. Brain dump!

If her periods are heavy then the Iron is really important. I think it is worth supplementing it separately at a high dose for a few months. For me it was like the 'battery starter' that got things going. Usually doctors test iron levels at the same time as TSH. My doctors starts getting shrill if I don't confirm that I am taking iron regularly.

Watching this with interest as I'm having a complete thyroid panel done via medichecks tomorrow.

Always had symptoms but tsh was 1.7 so been left to suffer not knowing what it wrong. I also have incredible hormone imbalances so never sure what is what.

Several months ago had injury to throat, it still hurts now. Had new symptoms including left eyebrow loss (they were thinning slightly already) and sudden emergence of a double chin and puffy face despite weight staying same (130lbs)

I'm an absolute mess. Not coping with feeling ill at all, and especially with changes to appearance as I have severe BDD. Can't cope.

I will let you know how the medichecks goes.

As there are knowledgable people on here, does anyone know how to raise ferritin if iron tablets don't work? I had this tested twice in 2016 and 17 - my ferritin was in the early twenties and a year of iron did nothing to change it, I'm shocked! I used two kinds. I think I switched to ferrous fumarate halfway through as a read that was better on a hairloss site (also have thinning hair and very bad receding)

I'm now on beef liver pills instead. Any ideas how to help ferritin if iron supplementation doesn't raise it?

I have hypothyroidism and on 150mg of Levo a day. Luckily I've had positive results taking them, I feel for you ladies who haven't. Thanks for all the really useful information in this thread!

In terms of iron levels as asked by poster above, I found Spatone worked really well for me. I could not tolerate the iron tablets but the Spatone got my iron levels back to where they should be quite quickly after a massive post birth blood loss.

Iron is more important than gps and even a few endos realise. My endo did think 50 was too low.

However, on my ferritin print outs and on any description of ferritin blood ranges it clearly states that over 70 was 'normal'. I did notice when it was 50.

You must take iron and thyroxine well apart - check with pharmacist bit iirc it might be 2-4 hours.

Quiet I hope your test tell you what you need to know. For you, iron will be really important to help your thyroid as well as iodine and selenium.

Sorry this is a bit long but I want to explain what happened for me but everyone is different!

I really struggled to get my iron up and stay there - I also started having extremely bad gut issues due to the iron. Even when I came off. Gp suggested looking at fodmaps diet and staying off the iron and testing after a month. I worked out milk had become a tummy trigger and did a month no milk (had some hard cheese sometimes) and no gluten and a few other bits I'd worked out triggered ibs. Plus probiotic tablets. I don't think I took spatone then to be safe but I ate lots of rare steaks and venison with orange juice (snd any other iron rich foods) and switched to the completely plain oatley (no calcium). My ferritin went up by 30 points in a month; it had taken 3-4 months to get that WITH prescribed iron tablets.

I took a calcium and magnesium tablet at night and was taking prenatal tablets already (full rda iodine) so the milk loss wasn't an issue.

I don't think gluten is an issue for me at all; milk does interfere with iron absorption however due to the calcium (known issue for anaemic children) and I was drinking it all day in red bush tea. Plus it was causing chaos in my gut.

After the month I started taking spatone in orange juice (vit c helps absorption) and carried on with the oatley. It was a while before I could have milk again but I was much more mindful about having cups of tea near meals with iron or near spatone.

As iodine will be important to you for your thyroid function quiet, I'd take a multivitamin with the rda plus iron and selenium if you try cutting out milk. But see what your tests say.

Thyroxine works for the majority of patients (still not as great as a healthy thyroid though) but there are a percentage for whom they either need more than normal or need t3 instead or as well - big issues with that recently due to costs and gps have been banned from prescribing.

Thanks for the spatone recommendation avocado and thank you for the excellent advice and detail in your post Ekphrasis that is most helpful. Very interesting about the diet increasing ferritin.

After experimenting I did go gluten free (I still have it at a restaurant etc but that's rare) as it does make me feel worse. (I tried it before but got back into old habits!) I had a look at fodmaps and my new diet is already agreeing with it so that sounds good, I just need to add more good foods. I shall be increasing meat intake amongst things, especially steak, and I've never had venison before - I shall try this! I'm also now using ACV to create more stomach acid to help absorb nutrients better. I think even with a good thyroid we still need a decent ferritin level. I feel like that alone could improve how a person feels?

I already take coconut oil as I read this to be good for thyroid health. Perhaps you could look into it for your daughter op . Also another big change I have made is reduce polyunsaturated fats as these block thyroid hormone secretion apparently. Another thing you could look into? I'm no expert though, just google a lot. It is awful dealing with health issues at such a young age when you are supposed to be at your best. She has my sympathies. I'm 32 now and have lost a lot of years to failing health, never really knowing what to do, just trying things and hoping.

(I did try iodine btw - nascent iodine 1 drop with 600mcg - but it kept causing new freckles and small moles appear - very weird! I could only find a few people that this happened to. Something to do with estrogen they say. I'm quite a case with the hormones 🙄)

Interestingly I read that a century ago doctors would use thyroid medication to treat not only hypothyroidism but hormonal issues (including good old pms) as it was recognised that these problems stemmed originally from the thyroid working insufficiently. Nowadays they treat it with more hormones e.g. Birth control pill, causing more problems and health issues for everyone down the line, including thyroid troubles. Seems a bit mad.

If op or anyone reading is thinking of using medichecks then they have a 20% off deal with a code right now, plus some other deals, so you can save a bit.

Code is INSIDEOUT4

Thank you all so very much, particularly Ekphrasis, your information is incredible
My DD had a full blood test done last week, so I will get a printout & let you know the results.
My DD is so thrilled by this post & all of you lovely ladies, you have given her hope, when she didn't see any before.
I can't thank you all enough. I don't feel like I am battling the world on my own, I really do appreciate each & every one of you

That's great bump I really hope she bounces back from this let us know how she gets on.

I lost s post and can't repost it all yet 😭 but I'm listening to 'inside health' on radio 4 and they're talking about best ways to take iron - oddly lower individual doses alternate days results in 40% higher absorption. 60 milligrams they're saying.

I do wonder sometimes if that was my issue when taking the iron tablets, taking too much!

Marking place to read properly later. I am hypothyroid, on 50mg levo, TSH is 1.5ish, mostly feel ok but wonder if I could do better. My sister has a thyroid which is all over the place and very weirdly swings hypo to hyper and back again.

Can anyone recommend a really good private endocrinologist? Ideally in London/Midlands (I'm in London sister is Oxford area)

Hi mini, I recognise you from the Dec 2012 antenatal group I think? (I NC) Hope your not so lo is doing well!

I'm not a huge fan of the thyroid uk group but they do have a good list of endos they can recommend.

You could ask the gp if you could take 2 of 3 extra 25s a week; they may hesitate as you may have some residual thyroid function at the moment. In which case rda iodine and good iron plus selenium might help support if you're not already ok with those. Vit d and b12 are often mentioned mainly as deficiency is similar symptom wise.

Your sister possibly has hashimotos or even Graves - it is really tough to manage.

You do have a right to see an endo through the nhs though.

OP bottom line, if her TSH is rising on levo (or anything else) the GP needs to explain how it's being affective because when it is sufficient, TSH is pretty stable. That's the whole point!!

I really feel for your daughter - it brings back some bad memories. However, it CAN be sorted and it will be. It won't happen quickly though (as in overnight) because there's always a delay between upping/changing dosage or replacent and it having an impact of 4-6 weeks. That's why it's important to be proactive. It's ridiculous that this condition is so badly diagnosed and treated by GPS (and not only in the U.K.), but it is. If you can go to an endocronologist who deals extensively with thyroids, even if that means paying and you can manage, definitely do.

*effective!!

hi Ekphrasis! She's fine thanks, actually she turned up a little early (October rather than Dec) I do wonder if that had anything to do with thyroid actually as I'd only just started on the levo when I got pg. How is your little one?

Thank you for the thyroid uk tip, I had a little look and can't see a list of endos though, would you mind pointing it to me please?? We can afford private so would rather go straight to someone good (especially for my sister as hers is pretty complex) rather than take pot luck via NHS... Or I might be able to ask GP to do an NHS referral to a specific person if I can find the name of someone good.

I don't take any supplements at present so any of those could be low... Need to get on it! Thanks

Hi I can post more tomorrow (sorry busy week) but perhaps they've had to stop; try going on health unlocked and joining the thyroid uk group.

I have to say, I've occasionally had some very bad science from that forum but they may know good endos did you. I think your Tsh could certainly be a bit lower; an extra couple of 25s a week might help if you can ask the gp to help you minimise symptoms.

Hashimotos/ Graves is horrid though, sympathies to your sister. TPUK tend to say it can be helped by going gluten free; Ive just never found the hard evidence. There is a link to autoimmune thyroiditis and coeliacs but as two separate illnesses (more likely to get thyroid issues if coeliac)- I've not found scientific evidence that gluten impacts thyroid antibodies.

I'm a member of the British thyroid Foundation who are linked to many professional medical advisors. You can send emailed queries for medical advisors, ring up for information or ring several volunteers who have experience in a particular area of thyroid health. That is another possible place to contact. I've personally found them extremely helpful over the years.

I have Hashis and have to be gluten free I think a link will be found in the future as I stop absorbing food and obvs then vitamins if I take gluten , and obvs others have found exactly the same just need the medical field to eventually catch on to this! The training Gp's get on this condition is woeful, someone said if a medical student goes to the loo during the talk on Thyroid issues they will miss the whole talk ! and some Endos are so out of date.
Going gluten free might be well worth trying. As others have said you will need to become an expert for your daughter 25 or even 50 of Levo is such a low amount it will not impact on her and that is why she is so symptomatic. Unfortunately it has to be increased slowly and that's not a lot of help when you feel so ill. However reassure her there are options, but I would start off with the correct dose of Levo being achieved then see how she is. Health unlocked is a life saver (literally) and you may find a support group in your area as they have details on the site.

There is a known link between the two autoimmune diseases in that they often go hand in hand, but I've seen people saying that Hashis / Graves can be cured or progress of disease stopped through being gluten free of which there's no hard evidence.

If you are gluten sensitive, it's going to affect how you absorb nutrients and so yes potentially the vitamins needed for healthy thyroid or how you absorb thyroxine. However there's a big push online in thyroid communities that gluten free WILL cure you or help, whereas these things are very individual. Gluten free made no difference to me. Milk free raised my iron. Thyroxine was normal.

There's coeliacs - allergy- and intolerance- lots of irritation and digestive issues but no actual allergy. Many would say it's one and the same however coeliacs can be tested for with a blood test (gp has tested me several times to check) and the intolerance is found through an elimination diet though I believe sometimes a biopsy will show issues.

Certainly intolerance made my mil extremely ill, hair fell out etc.

www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-5-issue-6/vol-5-issue-6-p-3-4/

If you have an absorption issue due to gluten intolerance/ allergy, you will need more thyroxine tablets to be euthyroid unless gluten free.

If you have coeliacs disease you are more likely to get a thyroid issue and remaining gluten free can sometimes reverse the beginnings of the thyroid disease. If the thyroid has been destroyed, it won't, but absorption of thyroxine will improve.

What isn't proven is that the beginnings of a thyroid issue can be stopped by going gluten free in the absence of coeliacs. Gluten free wouldn't have cured / stopped my thyroid issue.

www.sciencedirect.com/science/article/pii/S0002927000024102

I dont think anyone is saying GF is a cure sadly there is no cure, its managing symptoms, and everyone's are slightly different but many find going GF helps with the non absorption terrible stomach issues. Unfortunately its a horrible condition very misunderstood and dismissed as we look "fine" and of course it affects mainly woman which is why in my opinion it is dismissed as "your blood results are within a level you should be fine " by Endos. The one i see is very good and I do believe some more enlightened Endos are waking up to what their patients are actually telling them. i just think if it was any other condition and Doctors said there is only one single drug and no other alternative we are allowed to prescribe , people would be shocked.