Possible link between conditions : Hi. I have... - Thyroid UK

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Possible link between conditions

AnneGood profile image
17 Replies

Hi. I have hypothyroidism, paroxysmal atrial fibrillation, glaucoma and rheumatoid arthritis. I take medication/use eye drops for all of these conditions except for the RA, which has flared up badly recently. I'm also on Apixaban. Up until 2 years ago I was perfectly healthy and took nothing stronger than paracetamol occasionally. Now it feels as if I've suddenly reached my 'best before date'. I'm 64 and still as active as I can be - which is pretty active. I can't help wondering if there is a link between these conditions as they all seem to have flared up at the same time. Any thoughts? Also any thoughts on vitamin supplements? Throughout my life I've generally taken these but have stopped as I was worried about possible interactions with drugs.

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AnneGood profile image
AnneGood
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Marz profile image
Marz

Hi and Welcome ! Do you have any test results with ranges you could share ? Do you have Hashimotos - auto-immune Thyroiditis ? Hashi's is auto-immune as is your RA - so thought there maybe a connection.

Have you had B12 - Folate - Ferritin - VitD tested - they are often low in range when we are Hypo and improving the levels can help us to feel well and enable the thyroid hormones to work well in the body.

I am not a Doc - but it seems that so many conditions are linked to thyroid issues. How much Levothyroxine are you taking ?

AnneGood profile image
AnneGood in reply toMarz

Hi Marz. Thanks for your reply. I had my B12 etc tested whilst an underactive thyroid was being considered. Unfortunately I don't have the actual results, I just remember my GPS saying they were fine before telling me to come back for another test for my thyroid in a couple of months. I'm on 50 micrograms of levothyroxine daily atm. My last (and first) test post diagnosis a couple of weeks ago showed that my TSH was still high but my T4 was 'acceptable' i.e. just inside the normal range so I was told to remain on the same amount and have another test in 3 months time. This was relayed by the receptionist over the phone.

I don't know if I have hashimoto's or not. I've not been told either way by my GP.

Marz profile image
Marz in reply toAnneGood

Always obtain copies of all your results so you can monitor your own health and check what has been missed 😊 They are legally yours.

When a doctor says fine - they mean in range - but where you are in the range is key. B12 over 500 - VitD 100+ - Folate & Ferritin mid range.

Your tests should be every 6 weeks and the dose changed accordingly. The 50mcg is a low dose if your TSH is still high. On treatmet it is better around 1 and the FT4 near the top of the range. Having copies of your results makes posting easier - otherwise we are mostly guessing !

The T3 is the most important result snd rarely done in the NHS. You need to rule out Hashimotos too - especially as you have RA - as there is so much we can do to help ourselves. Again the NHS rarely test both anti-bodies so people are missed.

Private Testing - used by 100's & 100's on the forum - is available through the main website - click onto - About Testing ...

thyroiduk.org

How do you take your Levo ? - away from other meds and food ?

You will see from reading this forum that Thyroid knowledge from many GP's and Endos is sadly lacking.

AnneGood profile image
AnneGood in reply toMarz

Thanks again Marz. I think I need to go back to the doctor about my RA, as although diagnosed I have never been treated for it. The flare up I am having is really affecting my mobility at the moment. Whilst there I need to ask about whether or not I have hashimoto's. I'll get copies of my results too so I can monitor them going forward.

And yes, I take my medication well away from everything else, with a cup full of water.

Marz profile image
Marz in reply toAnneGood

Sadly the GP's rarely acknowledge Hashimotos - as they think it is treated the same as any form of Hypothyroidism. Also the NHS only test the TPO when there is also the Tg Anti-body - you could be negative for TPO and positive for Tg. Having copies for your results will help you a great deal.

Were you diagnosed with RA by a Rheumatologist ? I would ask for your Vitamin and Mineral results before you see your GP - so you can discuss the results. Am thinking they may not have done your VitD ? You can ring the Surgery asking for copies of your results for the last year and tell them you will collect them in a couple of days.

nhs.uk/chq/pages/1309.aspx?...

The above link takes you to the NHS website with information about obtaining your results - they are YOURS !! I live in Crete and we have to keep everything - including scans and blood test results. Makes life a whole lot easier as we can take them to anyone for an opinion ....

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

The above link takes you to the Private Testing companies - to ensure you have the correct testing. Also lots more information on the Thyroid UK website which will confirm all that is being discussed on this thread :-)

AnneGood profile image
AnneGood in reply toMarz

Hi,

I was told I had RA by a doctor I was referred to for a steroid injection a couple of years ago. The NHS sent me to a private hospital for the injection, so it wasn't as if I was referred to a specialist. Part of the problem is that I see a cardiologist for my heart, an ophthalmologist for my vision and a nurse for my blood thinning meds. No one seems to be 'joining up the dots' and looking at the overall picture.

Thanks again for the advice. It's great to be able to communicate with people who are further down the path than me.

Marz profile image
Marz in reply toAnneGood

I do believe you should be seen by a Consultant Rheumatologist - but on the other hand maybe not as you will possibly be prescribed drugs ! Heart issues are often linked to LOW Thyroid - my heart would tell me when my next dose of T3 was needed ! There is a book on Amazon - Thyroid and Heart Failure - you can Look inside and read the contents :-)

amazon.co.uk/Thyroid-Heart-...

Yes if you click onto my name above you can read my edited Bio - only takes a couple of minutes - so I know what you mean by not joining up the dots.

Did you look at the links in my previous response ?

It is possible the thyroid could be linked to the eye condition too. My eyes are strange when I need my next B12 jab :-)

AnneGood profile image
AnneGood in reply toMarz

Thanks Marz. Your bio was interesting! I was diagnosed with P A Fib after being admitted to hospital with very high blood pressure and very erratic heart beat just over a year ago. Around the same time the optician picked up the glaucoma. I only had the thyroid problem identified as a a cardiology registrar listened to what I was saying about weight gain and exhaustion. It just all feels a bit piecemeal. I think I need to tell each of them about what else is going on with my health rather than assuming they look at the bigger picture.

Anne

Marz profile image
Marz in reply toAnneGood

All the more reason why we have to take charge and read .... and read to learn as much as possible. We cannot rely on the Docs to do their job anymore as they have to follow guidelines that have not been written to favour the patient. Docs work in fear of losing their licence to practice if they step outside the box .... :-(

Raised blood pressure and erratic heartbeat are both Hypo symptoms - have you looked at the list on Thyroid UK ?

in reply toAnneGood

I believe the way many specialists are wrapped up in the body parts they care for, it's up to us (patients) to connect all our dots and see a complete person. It shouldn't have to be this way but it is. Let's think of ourselves as the driver of our own treatment team and plans. Difficult to juggle multiple doctors but necessary. And take documentation of findings to dr visits. Hopefully will help us avoid some (not all) 'medical skirmishes'. Wearing kid gloves may help. LOL-but not really!!! When I was diagnosed with a-fib in 2011 there were 2 EP's and 1 regular cardiologist in my room all discussing various dx and poss tx. One bright endo walked in and said "I believe one of your main a-fib triggers is you are on too much levothyroxin. He was right. I was on 300 mcg/day. (Yes, really; no not a typo). So it was lowered and felt well for several years. But I chose to have my PCP/GP follow my thyroid care which I now realize was a mistake. Should have gone with the endo. I'd forgotten his name as I only saw him that once in the hospital. As it turns out he is the one I am seeing next week. I have high hopes. Had been on 300 mcg since 1984; no one ever thought to question it, including me. I had radiation for larynx cancer in '84 and the thinking at the time after neck radiation was to suppress as much thyroid function as possible to lower the risk of thyroid cancer down the road. After reading this thread today I'm going to ask for a thyroid scan next week. I am hoarse, and have difficulty swallowing at times but til today attributed all my sx to the cancer treatment. It's easy for doctors AND us to forget that symptoms can be caused by more than one problem at a time.

shaws profile image
shawsAdministrator in reply toAnneGood

You should ask to be referred to a Rheumatologist as there have been changes in the way they diagnose/treat so don't wast time and get an appointment.

Usually if we have one autoimmune condition we develop more. I have three so far and hope I don't get any more.

Re getting thyroid hormone tests. It should always be at the very earliest, fasting and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Atrial fibrillation can also be caused by hypothyroidism especially if not on a optimum dose of hormones.

healthunlocked.com/thyroidu....

If your dose of levothyroxine wasn't increased from 50mcg to 75mcg after six weeks you most probably need an increase. The fact is that GPs don't know much except believe if TSH is somewhere in the range we're on sufficient. That isn't true. The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the range. The latter two are rarely tested.

AnneGood profile image
AnneGood in reply toshaws

Thanks. This is really helpful. I'll get results from my gp tomorrow and make an appointment later in the week.

Anne

shaws profile image
shawsAdministrator in reply toAnneGood

I should have said to always get print-out of your results with the ranges for your own records and you can post for comments upon them.

ShootingStars profile image
ShootingStars in reply toMarz

Hi. Yes, as Marz mentions, your hypothyroidism could be caused by an autoimmune disease called Hashimoto's and your RA is autoimmune. The tests that are conducted to determine whether or not you have Hashimoto's are called TPO/ab and TG/ab, or thyroidperoxidase antibody and thyroglobulin antibody. Both must be tested to determine or eliminate autoimmune as the cause of your thyroid disease.

Are you taking thyroid medication and have your symptoms now been eliminated? If you are still suffering then bloods need to be ran every 6 weeks, not every few months, and then meds are adjusted accordingly.

Marz profile image
Marz in reply toShootingStars

Ann is on 50 mcg - see above :-)

AnneGood profile image
AnneGood in reply toMarz

Interesting! Even getting a diagnosis took about 9 months. Every time I got the results from each set of tests the doctor's response was to 'leave it for a while' then book another appointment in a couple of months if I still felt I needed to. I felt like a malingerer although I was sure something was wrong. I think I need to go back to the doctor.

TSH110 profile image
TSH110

They are related conditions. My mother’s side have hypothyroidism glaucoma here are some articles you might find interesting:

eyeworld.org/article-thyroi...

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

hindawi.com/journals/bmri/2...

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