My underactive thyroid was slowly killing me

[helvella]

Today's Guardian/Observer has the article below. The basic story will be so familiar to so many here, but it is unusual to read such a personal story by a journalist. A male journalist with Hashimoto's.

Please go and read it. Please comment on it as you wish - though you do have to sign up in order to do so.

My underactive thyroid was slowly killing me

After years of mysterious symptoms, I discovered that an underactive thyroid was to blame. Now, I feel like a fog has lifted

The article ends:

There will also be people out there who are going through what I experienced. Maybe they will read this and act. They should, because doctors never call you. You always have to call them.

theguardian.com/lifeandstyl...

Rod

[PinkNinja]

Yes, it is unusual isn't it! I read his blog a while back. It's good to hear he is writing again and bringing media attention to this disease. So many men get dismissed with their symptoms because 'men don't get thyroid problems', as my husband was told when he went to see his doctor about his 'hyper' symptoms. His dad has Graves so he was quite shocked to be told it couldn't be his thyroid and to be dismissed in such a way. Hopefully fewer men will be dismissed like this if more like him draw attention to thyroid disease in men.

You can read his blog here ianprobertbooks.wordpress.c...

Thanks for posting this. It was refreshing read

Carolyn x

[PinkNinja in reply to PinkNinja]

Shinypanda finally found the time to write a response He is getting a lot of support from people and has had a lot of comments, which is great to see!

[nicolajane]

I'm really glad this guy wrote about his experience and that the Guardian published it.

But I can't help but feel a bit disappointed - I have read several similar stories in the press but the 'happy ending' is always the same: Levothyroxine the magic pill that makes everything better. Not once have I read in the press about an individual's struggle to find optimal treatment.

Are people like us actually very rare? I would love to know the statistics of how many people fully regain their health on thyroxine versus those who dont. (Can't help feeling there's a bit of a conspiracy - i.e., that certain bodies do not want it publicised that there are alternatives like NDT or T3)

Apologies for my negative outlook!!

[helvella in reply to nicolajane]

Although so far I too seem to do OK on levothyroxine, I have seen the agonies of someone trying to get appropriate treatment with anything else. And, of course, read the many, many such stories here.

I encourage you to make that a comment on Ian Probert's story - it is most definitely relevant and worth making. Maybe although he is doing not too badly, he does not know about the possibilities? Maybe he would really appreciate your comment?

(The thing that almost haunts me about HU/TUK is the number of people who did OK on levothyroxine for months, years or even decades before finding they were going downhill. My relief from that is when they try some T3 or desiccated thyroid and recover again.)

Rod

[Houghton73shaw in reply to helvella]

Wow, this makes total sense to me.... I perhaps am one of the people who originally started out ok on thyroxine 100mcg in 1998 to 250mcg in March 2013! Just been diagnosed with LUPUS but the fact my blood showed my thyroid at borderline levels ( asked me if I had been taking my thyroxine by the GP) . I didn't know anything about T3 but I will be asking GP the question now! Thanks

[nicolajane in reply to helvella]

Have commented (I'm piggywig)!

[helvella in reply to nicolajane]

Nice post.

[Taffhamster in reply to nicolajane]

Me too – I'm AuntyBB (or I'm Spartacus, as and when appropriate!)

[editfmrt in reply to helvella]

Couldn't agree more. Would like to add one more possibility to explain why some people appear to do well for many years. I thought that too and so did my sister. During that 25 years or so she has had more health problems than I have but I now reaslise we believed we were doing well. It's just that doctors don't recognise the links to poorly managed thyroid treatment.

I now know this is why my sister has been on statins for years for high colesterol, blood pressure tablets, reapeated urine infections, chest infections and sinus problems, had a hysterectomy, gall bladder removal, digestive issues, depression and sun sensitivity. Sound familiar?

"Oh no it's not your thyroid!" How many people who do not find there way to sites like this actually believe what they are being told? We did. If you had asked me 8 years ago before my sister became extremely ill, I would have said, oh thyroid disease is not a problem - you just have to remember to take a little pill every day!

[MaryMary in reply to helvella]

Hi Rod,

Thanks for posting.

I hadn't heard before that many people with UHT faint - this is a new one to me.

One sentence stood out for me along the lines of he still has bad days with fatigue and depression, so he still has problems!

Mary

[nightingale-56 in reply to helvella]

Although I was alright on just Levo since 1997 until 2007, since my debacle with antibiotics and although my levels are normal (quite good on paper actually) I have had some awful symptoms that are not getting much better, and now feel that I need either some T3 or NDT. I do not think my chances of getting them from GP or Endo are very good though. At the moment am getting better answers from the Dermatologist so will work with him for a while longer. Janet.

[JennyC2 in reply to helvella]

I wonder too how many of us come to believe that feeling below par is normal? I know that for a long time I didn't think it could get better but reading this site makes you realise that better is possible - just not easy! Jx

[galathea in reply to nicolajane]

The failure rate for those on thyroxine only is around 13% Of this group, about 15% of them are failing on levothyroxine because of a faulty gene which hinders conversion of t4 to t3, the rest may be failing because of, iron, ferritn, b12, low dose, and all the other vits and minerals which are frequently mentioned on here.

Xx. G

[MaryMary in reply to galathea]

Hi Galathea

Interesting statistics. Would you be able to give me the link to the faulty gene information please? I want to send this to my cousin who is struggling big time on T4 and her GP won't listen to her about T 3.

Many thanks in advance

mary

[RedApple in reply to MaryMary]

Galathea may be talking about the DI02 gene. You can find information on this on the main Thyroid UK website here:

thyroiduk.org.uk/tuk/testin...

[galathea in reply to RedApple]

Yep, that's the one!

[MaryMary in reply to RedApple]

Thanks

[Holly10 in reply to RedApple]

Hi RedApple, I would like to find out how i stand in relation to the D102 gene but does the fact that I am taking a very small amount of T3 (5mcg) mean that this will muddy the results of any test. I would welcome some ammunition to present to my Endo to persuade him to increase my dose and convince my GP that I am not wasting his budget on "unnecessary" meds. The 5mcg is obviously a 'special' and is quite expensive, I offered to cut up 20mcg tablets (i thought if i could get my hands on some tablets in could do a bit of experimenting myself), but the GPs Pharmacist told me that the tablets are too small, is this true.

Many thanks in advance.

[PinkNinja in reply to Holly10]

You might be best posting this as a new question so that more people see it and can answer your question

[RedApple in reply to Holly10]

Hi Holly,

No, the DI02 gene test will not be affected by the fact you are taking T3.

And yes, I think you would find it difficult to cut the 20mcg T3 tablets into four. They crumble very easily. I find it's difficult to accurately cut them in half even.

[MaryF in reply to nicolajane]

The moderators on The Guardian are out in full force, I have heard that many comments are not getting on! Mary F x

[RedApple in reply to MaryF]

At least they have allowed the posts through that point to this support group.

[MaryF in reply to RedApple]

Yes... and some of the comments people copied and pasted to me were very straight forward, polite and to the point comments, but did mention attitudes and lack of diagnosis! Nothing rude. But good to see TUK up there and being written about. Mary F x

[helvella in reply to MaryF]

Most often you can see the (former) existence of posts that have been moderated out. They get replaced by this message:

This comment was removed by a moderator because it didn't abide by our community standards. Replies may also be deleted. For more detail see our FAQs.

However, as that says, replies to a moderated post can also disappear. The Guardian's Comment Is Free system is very robust, often having a lot of disagreement and controversial opinions.

Their policies can be seen here:

theguardian.com/community-s...

and on links from there.

I can't see many deleted comments (if you see what I mean).

Rod

[MaryF in reply to helvella]

Yes I know the system well...... however sometimes the moderators are moderated themselves by eyes kept on our national papers.... various regulatory bodies actually do have software picking up trigger names/phrases etc. MaryF

[Taffhamster in reply to nicolajane]

I've commented about the borderline cases and those that don't respond to T4-only treatment being more problematic (this guy's diagnosis was fairly cut and dried). Hope I don't get modded!

[Hidden]

Thanks for posting this. I do read The Guardian but obviously missed it!

I've posted up on their website but am most upset that my Forum name on here has been taken, of course I may have originally registered already with that and brain fog stepped in!!

Hopefully loads of us will reply with our experiences especially with regard to bad treatment for those not on thyroxine.

[helvella in reply to Hidden]

I am wondering if it will be in tomorrow's paper edition?

Thanks for commenting.

[Hidden]

Thanks Rod.

Have commented....

x

[helvella in reply to Hidden]

Good one!

[springer]

Yes, I can't help wondering how he will be faring in a few years time!

[galathea in reply to springer]

Well, because he in a position to report it and get attention drawn to it, it's Sod's law that he will be one of the 87% who do fine with T4 only..... Actually they either do fine, or don't make the connection between the poor health and the levo only so they don't query it.

[tegz in reply to galathea]

Yep, there's a world of difference between 'just coping' and 'optimal' lifestyle!

[Marz]

...my own personal experience was that I felt heaps better on T4 when dignosed in late 2005. The feeling - I am guessing - was relative to how bad I was feeling before. You can bask in this state for a long time until certain snippets of information from a forum like this resonate - you try them - and so the improvement continues. Some people do well with sub-optimal health - there are lots of them around. Some of us strive for OPTIMAL health. Maybe to do with personality types ?

I find it interesting that many Hypo's or Hashi's choose jobs/careers that are well suited to their condition - without realising it. Self-employed journalist - maybe I should have tried it !! Not many of us are world skiers or rock climbers are we ?

Thank you Rod for posting.....

[nicolajane in reply to Marz]

Lol! I'm constantly trying to think up ways of making a living which will allow for being completely useless on off days, preferably a 20 hour week versus 40 and duvet days as required.........freelance journalist could be an option! Oh, except for the terrible concentration and headaches after 15 minutes in front of the screen......maybe not....! Career ideas most welcome....

[Hidden in reply to nicolajane]

my thoughts too! it's also a topic on my other site (folk with TOS - thoracic outlet syndrome) i.e most with limited arm function... 'politician' was quite popular! lol!

[helvella in reply to Marz]

Maybe not many - but some:

hypothyroidathlete.blogspot...

Rod

[Marz in reply to helvella]

[tilly83]

really good article, if there were more like this perhaps GPs' would be more proactive - it's awful he had to wait so many years for a basic blood test..... I find myself looking at people now and actually thinking, 'I bet they are hypo - hyper'.... can't say it though.....

[helvella in reply to tilly83]

On the bus. On the television. Behind the counter. Walking down the street.

They are everywhere!!!!

Or is it my imagination?

Rod

[PinkNinja in reply to helvella]

A bit like Sixth Sense - 'I see hypothyroid people'. I also find myself looking at people and wondering whether to ask them if they ever had their thyroid tested. Some people just have that 'look' that screams 'I have a thyroid problem but I haven't a clue about it'

[tilly83 in reply to helvella]

I don't think it is there's a lot of undiagnosed people out there......

[edysia2]

Lucky man, finally he has the treatment he needs !

[Truth42]

Hi guys. I wrote this thing. And yes I still have bad times. In the middle of a relapse right now but I have a feeling that I may have caused this by self-prescribing myself T3. It's not a happy ending. It's a happyish ending. I've always maintained that I'm about 80% of what I once was.

The Mail have asked me to write a similar and longer article. I'll try to clarify if I can.

[helvella in reply to Truth42]

Ian,

Good to see you post here.

Did you add T3? Or substitute?

Rod

[PinkNinja in reply to Truth42]

Echoing Rod, it is good to see you posting.

There is so much trial and error in getting the right dose of the right thyroid hormones, or the right combination of hormones. Many of us have tried different regimens but are getting better. I'm about 80% too, which is a huge improvement on 18 months ago. I reckon I was about 20% then even though my blood results looked pretty excellent. Luckily I found Thyroid UK who soon educated me

I look forward to your article in the Mail

Carolyn x

[Truth42 in reply to PinkNinja]

Hi Caroline. It's a really shitty thing to have. I wouldn't wish it on my worst enemy. I have so much to learn. It's been a very positive week for me but I'm feeling particularly negative right now because I'm really tired.

I've discovered this week that I'm not alone. And also that I can make some kind of contribution to expanding awareness of what we're all going through. I'm going to try and do this if I can. Ian x

[PinkNinja in reply to Truth42]

We are very grateful for what you are doing, Ian. If we can help you in any way with information and support in improving your own health, please do let us know

[Truth42 in reply to PinkNinja]

Nothing to be grateful for Carolyn. And thanks for the offer of help. I think there will be times when I will need it. Just as, I suppose, there are times when you will. Ian x

[Truth42]

Thanks Rod. Well I'm relatively new to this game. I added T3 and I started taking desiccated cow thyroid that I bought online in addition to 150 levo. I was thinking that adding T3 and going the natural thyroid route might improve matters. The end result is that I feel like shit and I'm as exhausted as I used to be pre -levo. It's taught me a valuable lesson.

[PinkNinja in reply to Truth42]

If you have Hashimoto's, you may find that dessicated thyroid might not be great for you. Some people find it causes an increase in antibodies until they get to a high enough dose. It also seems to be best not to take t3 and t4 at the same time of day for some people (me being one of them). Also, t3 just doesn't suit some people and they tend to do better with a higher dose of levo instead.

Sometimes it's not the thyroid medication that is the problem but something like low iron, folate, B12 or vitamin D. They all seem to be important for good metabolic health and low levels can cause strange side-effects, including fatigue, when taking thyroid hormones. If you haven't already, you might want to get serum iron, ferritin, folate, B12 and vitamin D tested. Even if your results are in the 'normal' ranges, they may not be high enough. The normal ranges for all but vitamin D seem to be too low for most people.

Anyway, I hope you find the answer to getting your health back.

Carolyn x

[Truth42 in reply to PinkNinja]

Thanks again Carolyn. I think that I'm being taught a lesson for my cavalier attitude. The problem with pills is that they look a little like sweets.

[RedApple in reply to Truth42]

Ian, thanks so much for another good article, this time in the Daily Mail. As long as this condition continues to be dismissed, overlooked and ignored by the medical profession, there can never be too many thyroid articles in the media!

Here's the link for those who've not yet seen it

dailymail.co.uk/health/arti...

[Truth42 in reply to RedApple]

Thanks RedApple. Not proud of being in The Mail but I've already had good feedback from fellow sufferers. Ian

[RedApple in reply to Truth42]

This condition takes away your dignity... sometimes in surprising ways! But really, we need to keep plugging away to get the message across, whatever it takes. Keep the articles coming if you can, we all appreciate it, and those yet to be diagnosed will too

[marin5 in reply to Truth42]

Truth 42, I am marin5 &I’m also in a bind. I was on all the synthetic T4’s for 30 years, and never feeling like I should. I do not convert. Finally a Doc who tried me on NDT. Went thru many changes, on to finally nature throid which it seemed was working until my feet, ankles, and calves, which had been swollen, went viral. My left calf grew to twice the size of my right calf, and the skin hardened like alligator skin! very difficult to bend my legs, to get into bathtub to shower, etc. Then something happened that the nature throid was impossible to purchase?? Now It’s 12/16/2017 and my Doc orders Two scripts for me in generic form, that I can’t take because of the fillers in generics.I pay an extra co pay monthly for the Brand names, but my Doc ignored that and started a whole new ball rolling!it was a Friday and Doc ordered another script of Levoxyl and 5mcg of T3 which the Insurer wouldn’t pay for cause the Pharma couldn’t take the generics back, and I can’t get any more thyroid meds until January 7th?which my Doc can’t get through his head. Now It’s the week end and I have no meds but a months supply of T3 5mcg’s, so I texted Health Unlimited for help to go T3 alone! They were wonderful and within 6 days, my swelling went down, skin got soft, Thyroid pain subsided, and I felt great! My Doc had put me in that position, but now won’t order the 25?a day Of T3 I need! He insists Levoxyl which has also had a history of swelling me. I won’t do it and he’s on the phon insisting, I tell him no and thatbhe causedit, but now my labs come back and all my levels are great, but even that does not sway him! He says that there has never been a Scientific trial done to prove that T4 alone is safe and he has my life in his hands. tell him that for 30 years I was kept on T4?alone and no one worried about me thenand no I wont take T4, when Inam doing T3 thatbis working! But now my dilemma! I took my last dose of T3 yesterday 12/27 and my weight went from 142lbs on 12/12 to 133 lbs. and I need to order T3 from a reputable company, but all will be lost if I don’t do it now! Can anyone help me? On 12/30 I have to up my dose 10mcg of T3 to make it 7 5mcg’s of T3 (35mcg) instead of 5 5mcg’s(25mcg) that 35 will bebmy regular dose! Can anyone sell me some T3 till I can get a supply? I am marin5!

[helvella in reply to marin5]

marin5,

If you want help - as you so clearly say - post a NEW post. Buried down here on a four year old thread - it could easily get missed.

[Taffhamster]

Welcome, Ian – good to see you here. Hope you're feeling better soon. Thanks again for the Guardian feature and for taking the time and trouble to reply to so many of the comments. (I'm AuntyBB on Guardian Comments.) x