Never felt so bad!: Hashimoto, lichen sclerosis... - Thyroid UK

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Never felt so bad!

endofdays profile image
54 Replies

Hashimoto, lichen sclerosis, high cholesterol, high ferritin, eye issues, restless legs, worse hair loss....

Results from Medichecks: TSH 0.04mU/L ; Free T3 6.13 pmol/L ; Free throxine 20.9 pm0l/L so my meds are too high I guess

Thyroglobulin Antibodies 116IU/L and Thyroid Peroxidase Antibodies 191IU/mL;

Vitamins seem ok. Folate I still need to check.

Iron - Ferritin 181 ug/L - Far too high. Inflammation is said to be "normal".

Cholesterol is 7.92 and I don't want to take statins.

My eyes are sore and I get little sleep. Feel a bit of a train smash to be honest.

Apart from lowering my levothyroxine I have no idea what else to do. Any advice would be incredibly grateful. I am 60 now.

Thank you for this wonderful site!

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endofdays
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54 Replies
greygoose profile image
greygoose

You have Hashi's, so the high results might have nothing to do with your dose of levo. You could be coming down from a Hashi's 'hyper' swing, or it could just be a slight hiccup variation. Labs aren't 100% reliable with Hashi's.

If I were you, I would stop my levo for a few days, and see how you feel - you'll probably feel great because people usually do when they first stop their levo, but sooner or later the symptoms start returning. That's when you start levo again - possibly 25 mcg less than you took before, and see if you feel the need to increase it again.

But, do this on your own. Don't get your doctor involved because they don't understand Hashi's. And, if they reduce your prescription, they might not want to increase it again!

Your high cholesterol is suggesting that your normal level of circulation T3 is too low, so that too could suggest that it's the Hashi's to blame, rather than your dose of levo.

What is the range for the ferritin? And what are the numbers for CRP? Restless legs is often a sign that ferritin is actually too low. Low ferritin could cause hair-loss, too. So, I'm wondering if your ferritin actually is too high. :)

endofdays profile image
endofdays in reply to greygoose

Thank you so much. I thankfully did feel to have no levo for few days and start again when I feel I should. Glad you clarified that for me. T3 is 6.13 pmol/l? They said high normal? CRP is 2.74 mg/l. Ferritin is 181 ug/l which shows over 150? Hair loss is not good. Bless you !

greygoose profile image
greygoose in reply to endofdays

So, FT3 is not over-range, then. But might still be too high for you as an individual. Your CRP is middling, isn't it. But, your ferritin isn't high enough to worry about, I don't think. :)

endofdays profile image
endofdays in reply to greygoose

Yeah, I'm 5ft 2 and 54kgs lol. CRP definitely is middling. I thought my ferritin was crazy high but I'm not that clued up on everything. 🤗 Thank you all so much for your time and input. I feel very blessed!

greygoose profile image
greygoose in reply to endofdays

You're very welcome. :)

endofdays profile image
endofdays in reply to greygoose

💟

SlowDragon profile image
SlowDragonAdministrator

As you are post menopause higher ferritin is “normal “

Male ferritin range is more appropriate at 15-400

You might have low iron

Could be worth doing full iron panel test

Ferritin can be high due to inflammation

Medichecks iron panel test

medichecks.com/products/iro...

What vitamin supplements are you currently taking

What were vitamin D, B12 results

endofdays profile image
endofdays in reply to SlowDragon

Hi. Thanks I will have a look at that. Supplements I take are probiotics (been constipated for months), Vitamin E (full 8 tochotrienols and tocopherols).Vitamin D was 86 nmol/l and B12 129 pmol/l.

SlowDragon profile image
SlowDragonAdministrator in reply to endofdays

What’s the range on B12

endofdays profile image
endofdays in reply to SlowDragon

37.5 to 150

SlowDragon profile image
SlowDragonAdministrator in reply to endofdays

Ok ….so it good

SlowDragon profile image
SlowDragonAdministrator

Have you had coeliac blood test done

Are you on strictly gluten free diet or dairy free diet

Lichen planus and lichen sclerosis, like Hashimoto’s, often improves on absolutely strictly gluten free diet

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

If yes which brand

Suggest you reduce levothyroxine a SMALL amount

Perhaps reduce 25mcg or 50mcg PER WEEK

Retest in 6-8 weeks

endofdays profile image
endofdays in reply to SlowDragon

Celiac done a while back and came back negative. Not on a strict gluten free or dairy free as I tried and it made very little difference. Test done at 09:14 and no levo 24hrs before. Same brand Levo and it's Northstar. Yes defo reducing by 25mcg. Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply to endofdays

Beware Northstar 25mcg is Teva brand

Northstar 50mcg and 100mcg are Accord brand

Gluten free likely to take 3-6 months to see any improvements in lichen

Yes defo reducing by 25mcg. Thank you!

You mean reducing dose by 25mcg a week?

endofdays profile image
endofdays in reply to SlowDragon

Aaah will look at the brand thing. Never felt I was great on these. Gluten free I think I need to re-focus again. ☺️ Thanks a mill!!

SlowDragon profile image
SlowDragonAdministrator in reply to endofdays

Currently on 100mcg = 700mcg per week

650mcg per week = 93mcg per day

600mcg per week = 86mcg per day

You say your weight is only 54kg

…..perhaps reduce to 600mcg per week

You could take 100mcg 5 days week and cut a 100mcg in half to get 2 x 50mcg for the other 2 days

endofdays profile image
endofdays

Great never thought about it like that. Very grateful ☺️

humanbean profile image
humanbean

Cholesterol is 7.92 and I don't want to take statins.

Then don't. Nobody can force you to take anything, and that includes statins. My cholesterol has been higher than yours, but I've always refused statins. You might find the following links of interest.

Note the reference to hypothyroidism on this link from the NHS :

nhs.uk/conditions/statins/c...

Look at the graphs in this link :

drmalcolmkendrick.org/2012/...

and note that mortality in women decreases the higher the cholesterol level.

It is worth reading all of this link :

spacedoc.com/articles/50-fa...

and paying particular attention to number 17.

This link to a thread on a diabetes forum has loads of links on cholesterol and statins :

diabetes.co.uk/forum/thread...

And from the same forum :

diabetes.co.uk/forum/thread...

You should find Dr Malcolm Kendrick's blog (he's written many blog articles on cholesterol) and his books are worth investigating :

amazon.co.uk/Malcolm-Kendri...

drmalcolmkendrick.org/

endofdays profile image
endofdays in reply to humanbean

Brilliant I will check them out soon as I can. Much appreciated!

mrskiki profile image
mrskiki in reply to endofdays

Yes my total cholesterol is slightly over range too, but looking at individual numbers, my HDL is also over range. In theory if I had the minimum of what they refer to often as the 'good cholesterol' HDL I'd be nearer to NHS range of <5 ! Which wouldnt make sense just to meet a number, especially as my thyroid results aren't stable yet. My Serum cholesterol/HDL ratio is OK but they don't seem to comment on that, just the total being over range.

endofdays profile image
endofdays in reply to mrskiki

I didn't ask to see my results which I should have done but looking at your message, I didn't even know anything about serum cholesterol. Every day is a school day regarding health especially. Thank you.

JaneChapple profile image
JaneChapple in reply to endofdays

You are entitled to see your results as they are legally yours. If your surgery has an electeonic syatem you can see them on there together with their ranges. Its important to know where they are within a given range.

For those on levo TSH needs to be one or below, FT4 needs to be in topvthird of range and FT3 in topvhalf, but we are all different and what suits one may not suit another.

If you dont hqve access just ask for a form to complete. You can also use the NHS App. You can also adk for a printout which is free of charge and its good to keep copies to see how things are going over time.

Never accept normal or otherwise over the phone.

The problem is drs are not trained in the reading of blood tests especially thyroid ones and they doont know the word 'optimal'.

Best wishes

Janexxx😘😎❤

endofdays profile image
endofdays in reply to JaneChapple

Yes true, I just didn't bother to ask for them. To be honest I was feeling fed up with all the things going wrong in my system but we press on! So true, Docs sure don't know the word Optimal!! Thank you and best wishes to you too Jane.

mrskiki profile image
mrskiki in reply to endofdays

Yes it's hard isn't it, along with my total cholesterol results I had HDL, LDL, triglycerides and then a cholesterol/HDL ratio. I'm noting them down along with everything else, I just read up why not to take statins especially as a female with thyroid issue, in case some random new GP in future had a statin obsession! Hasn't happened yet though, even before my diagnosis.

endofdays profile image
endofdays in reply to mrskiki

It is rubbish but I must say I do enjoy learning about our bodies. Thanks again!

JaneChapple profile image
JaneChapple in reply to endofdays

I was looking up lichen planus as have had it too, and came accross this interesting study. It can also be genetic but definitely thtroid related !

ncbi.nlm.nih.gov/pmc/articl...

Best wishes

Janexxx😁😎❤

endofdays profile image
endofdays in reply to JaneChapple

Thanks Jane I'll have a look at the link. Take care 💟

earthur profile image
earthur in reply to JaneChapple

I just read this study and it is fascinating. I have been hypothyroid, probably Hashi though no doctor has said this, for 55 years, am now 75, and was just diagnosed with lichen sclerosis. I have also had several tick bites this spring so far and the article draws a possible connection between tick diseases and the onset of LS. My endo also just reduced my dose of Armour in half so am on the lowest dose I have ever been on. Thanks for posting this.

JaneChapple profile image
JaneChapple in reply to earthur

Yes I tho7ght so too, I just wish drs and endos would take thyroid disease and associated diseases more seriously instead of just thinking its easy to treat with the NHS so-called 'gold standard' tablet levothyroxine!

May be send to your endo and doc, it wont do them any harm to read/research?!

JaneCxxx😘😎❤

earthur profile image
earthur in reply to JaneChapple

Yes, I am going to do that once the skin biopsy comes back to confirm it is LS. It certainly seems to fit the signs but as we both know, doctors want to see the test.

MrsSuzuki profile image
MrsSuzuki in reply to humanbean

Blimey, is that guy for real?! Why the hell am I on 80mg atovorstatin for life?

humanbean profile image
humanbean in reply to MrsSuzuki

Who are you referring to? And in reference to what?

MrsSuzuki profile image
MrsSuzuki in reply to humanbean

That spacedoc link

humanbean profile image
humanbean in reply to MrsSuzuki

I believe him.

The spacedoc site was started by a doctor who worked for NASA a long time ago, but he died a couple of years ago. Can't remember his name.

Edit : Just looked him up : Dr. Duane Graveline

You might find these links of interest too :

Cardiac Interventions That Work :

thennt.com/category/system/...

Cardiac Interventions That Don't Work :

thennt.com/category/system/...

Cardiac Interventions That Need More Study :

thennt.com/category/system/...

NNT stands for number needed to treat.

MrsSuzuki profile image
MrsSuzuki in reply to humanbean

Thank you

humanbean profile image
humanbean in reply to MrsSuzuki

Do a web search for "Do statins work for women" and decide for yourself.

Nothing would persuade me to take them.

My brain has enough problems without me removing one of the main ingredients needed for it i.e. cholesterol.

Also I have lots of health problems and I'm not going to take another drug which I consider completely unnecessary which will make me feel even worse than I already do.

endofdays profile image
endofdays in reply to humanbean

I feel the same sadly

Indigourchin profile image
Indigourchin

so hope you feel some improvement soon , i have had many of these issues and it can be so dispiriting. I really wanted to add my ongoing thanks to all who reply with knowledge and links of interest, this really is a great forum.

endofdays profile image
endofdays in reply to Indigourchin

Thank you. I actually do feel better this morning not having taken any Levo yesterday. And Yes, this is an amazing forum and a huge thanks to all who reply indeed! What better way to benefit by sharing one's experience, results and wisdom to help others. We are blessed and very grateful! Have a fab Friday.

Trill profile image
Trill

Could some of these things be separate issues? Eg the sore eyes. I suffer from blepharitis, and it needs checking out as if so, it can get very bad. Sleep is another of my long-term problems but try the downloadable Sleepio programme (also to be found on a mainstream type PC as this is what the NHS is recommending as better than sleeping pills.

endofdays profile image
endofdays in reply to Trill

Hi Trill. Eyes could be separate but I think the white lumps on my bottom eyelid could well be related to cholesterol. I went to Boots to check one Sunday but they told me to massage them with warm water often and if it didn't change then to go back. I haven't gotten back yet. Think they assume it's oil blockage but my eyes don't make the natural oils anymore. I'm thinking that my sleep issues could well be too much levo as well but time will tell. Thanks for letting me know about the sleepio programme. Have a fab day.

beatagod profile image
beatagod in reply to endofdays

Eyes is linking with Hashi. My Hashimoto start from Graves-Basedova. My TSH was 0,0002 but TPO 1002. Whan I had dry eye, too big to clouse and I must use eye drops. My weight goes down and I couldn’t stayed in one place.After few year my TSH was on good level.

After next 10 years without any symptoms, I slept 16-18 hours per day. Waight goes up, very high;).

Now, we are linking to the end. Me and Hashimoto.

In my opinion, worse is than pharmacy gives different brands of levothyroxine. After few years I know this brands I must use more like GP prescribed and another brand I must use lower dose.

2-3 years I lost sleeping. I don’t know why GP do not prescribe brand of levothyroxine.

Sorry for mybe too long replay.

endofdays profile image
endofdays in reply to beatagod

Thank you for your info. I'm off on holiday in couple of days so I'm hoping some sunshine and sand will do me the world of good too. Hope you get better soon too! Take care.

HowNowWhatNow profile image
HowNowWhatNow

Hi I have also had issues with lichen sclerosus and dry, sore eyes and dry mouth.

I discovered that when I stopped taking the Teva brand that my mouth became less dry but my eyes, sadly, didn’t. I do feel better off Teva, in all ways.

I wonder how you feel on days when you haven’t eaten sugar / drank alcohol the day previous? I feel worse and more foggy headed. In my case it doesn’t seem to be a diabetes problem - glucose levels seem OK - but I wonder whether candida overgrowth is a feature.

Do you have any problem with reflux?

Gum health? UTIs?

I seem to only have questions for you and observations from my own health, not (yet) for yours, but I am glad to see lots of good suggestions and ideas for you here.

HowNowWhatNow profile image
HowNowWhatNow in reply to HowNowWhatNow

Also, are you treating the constipation?

And if not, see how a two-four sachet a day course of Laxido for a few days makes you feel. Constipation can make you feel very unwell if not properly treated.

Apologies for replying to my own message here.

endofdays profile image
endofdays in reply to HowNowWhatNow

Hi Geogeor. Laxido never worked and my feeling was that it was due to high ferritin levels (after finding out after blood checks) I started taking probiotics and physillium husks and having more chia seeds etc and it's been much better. Thank you so much.😃

HowNowWhatNow profile image
HowNowWhatNow in reply to endofdays

So it’s been treated - that’s good to know

endofdays profile image
endofdays in reply to HowNowWhatNow

Sorry only saw this now. Missed it somehow. Will try reply properly this coming week. Off on our holiday now. Take care and thank you 💐

endofdays profile image
endofdays in reply to HowNowWhatNow

Hi Geogeor, sorry only replying now. Constipation I take physillium husks, chia seeds etc and still not much joy. Laxido I don't like and doesn't help. I think it may be my meds not right and high ferritin etc. Speaking to Doc beginning of July. Thank you.

HowNowWhatNow profile image
HowNowWhatNow in reply to endofdays

Good luck!

Come back and tell us how you get on.

endofdays profile image
endofdays

Well after getting my bloods back from Medichecks on 1st June and speaking to my GP, she suggested we do tests in July (I was away on holiday, she was away on holiday). My concerns were doing a liver function test, folate (medichecks couldn't as it was a finger prick test) checking TSH (medichecks suggested dose of Levo was too high) and doing another cholesterol test (last done in April and way too high), prescribing statins (not taking) and Ferritin (it was too high). Went to nurse to take bloods and doctor had only requested Thyroid meds!! I had specifically requested the other blood checks and it was obviously discounted. I was a bit shocked and frustrated as I did not understand the reason of my request being ignored. I called for a copy of TSH results and of course I got the receptionist telling me when I phoned in, "Everything is fine". Got my copy and TSH is 1.73 mU/L. I do remember the Doctor saying Ferritin is often high with autoimmune disease! (Hashimoto). Maybe she did not do cholesterol as I decided against the statins. Who knows, I give up! Hair loss worst it's ever been and sleep been awful but they somehow totally ignore the fact when I bring it up!

endofdays profile image
endofdays in reply to endofdays

Oh forgot to say, I am now taking the 75mcg of Teva. Before it was a 50 and 25mcg different brand. Been on that 16 days now.

humanbean profile image
humanbean in reply to endofdays

Maybe she did not do cholesterol as I decided against the statins.

Not having cholesterol tested is fine, in my opinion, with one exception - triglycerides. Keeping them low is important.

Info on research into cholesterol and triglycerides
endofdays profile image
endofdays in reply to humanbean

Aaah very interesting. Thank you for this. Much appreciated 😀

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