A few weeks ago I posted that I was seeing an endocrinologist, my second appointment. I asked for advice on taking my Levo given my blood test was mid morning. I had my appointment with the Endo on 19th July. He told me my TSK at 0.2 was too suppressed and that I should reduce my Levo dose, his usual mantra. He told that keeping my TSH that low could damage my heart! He said ‘ Do you have palpitations?’ I said no. ‘Chest pain.’ I said I have got some pain at present above my right breast. It’s a pulled muscle from my dog pulling on the lead. He said ‘ I’d like you to get that checked out’. I left. In the car on the way home my husband told me I’d best get it checked as we were due to fly to Greece on 21st July with all the family to celebrate my 70th birthday. So I won’t off to A&E. long story short I couldn’t go on holiday.it turns out I had suffered a severe heart attack. Had 4 blockages, 2 very severe and had to be stunted. The other 2 50% blocked but stenting failed so being treated with medication. I was in hospital for 6 days and I am now at home on enforced rest. . My whole life has suddenly changed drastically. Was the Endo right. How ironic is this. My hypothyroidism is at present the least of my worries
Devastating Irony: A few weeks ago I posted that... - Thyroid UK
Devastating Irony
That's a great shock. You may be interested in this article that Diogenes recently posted about the benefits of T3 therapy after a heart attack.
Very sorry to hear this
Hope you are soon feeling better and can get some return to normality
Did you get full thyroid and vitamin testing done recently before this consultation with endocrinologist
Previous post a year ago showed very low thyroid levels and vitamin levels
healthunlocked.com/thyroidu...
Being inappropriately treated thyroid wise tends to lead to low vitamin levels. B12 and folate were low
Low B12 and folate….tends to result in high homocysteine
webmd.com/heart-disease/gui...
High homocysteine possibly linked to heart disease
Heart needs good Ft3 levels
I was going to get a full panel after I had seen the Endo and take it to my G.P. As she seems more interested sympathetic to a suppressed TSH. I have just spoken to my pharmacist and asked if I can take Ingennus b12 with folate as I now have a raft of very heavy duty heart meds. He said it should be ok. I have also asked my G.P. To increase my vit d from 800 iu to 1000 iu. My problem now is my G.P. will probably listen t the Endo and decrease my Levothyroxine again. They will use my heart attack as justification!
Sending best wishes for your recovery.
I used to take Igennus b12 too till I discovered that it is better to avoid taking bqw and vit c at the same time and this brand have both in the same tablet.
Taking vitamin B-12 with vitamin C might reduce the available amount of vitamin B-12 in your body. To avoid this interaction, take vitamin C two or more hours after taking a vitamin B-12 supplement.mayoclinic.org › art-2...
Vitamin B-12 - Mayo Clinic
Suggest you wait to start B vitamins and get full thyroid and vitamin testing done
Request GP test vitamin D, folate, ferritin and B12
Meanwhile perhaps order some Thorne Basic B
Hi Esinedberry,
I'm so sorry this has happened to you, and so sad that you had to cancel your family holiday/celebrations.
I had a heart attack & stent in 2012......looking back at my records ...........I had an odd TSH spike of 6.33 (0.35 - 5.5) 6 months earlier, and 2 weeks before it was 2.78...........so, I'm not particularly convinced re low TSH & heart issues. My FT4 was bizarrely steady throughout at around 17.5 (9 - 22.7). I didn't know about testing FT3 in those days.
You should speak to your GP re B Supplements. There is some discussion regarding Folate supplements and stents perhaps not being a good combination. I do take a B Complex now, but my stent has had nearly 10yrs to settle.........it might be a bit too soon for you.
Cardiac rehab is excellent for information.
Sending you very best wishes for a full recovery Esinedharry. 🦋
Thank you so much. I am still in shock and finding it hard to come to terms with.
My TSH has been around 0.02 for twenty + years . When only TSH was tested without Free T4 and T3, new doc said I was overtreated and should reduce Thyroxine. Did and felt more hypo then had stroke. Basically T4 was not converting to T3 and it these that should be tested. Since adding T3 and ignoring TSH I’m feeling like a new woman a year later. You may be the same so hope that helps but whether you can get doctors to make the connections ??? So please don’t ignore hypothyroidism (read up about hypo and heart). and do get full Thyroid results. Good luck!
I'm sorry that the reduction in your dose caused a stroke. (amended).
It would have been a very scary situation and am glad you've recovered.
Also T3 for me restored my health.
Thanks. Stroke not heart attack ...thankfully only TIA from which recovery good. Wish I’d had the oomph to find Endo earlier but doctor at practice sounded so adamant that I’d never get T3. When I did ask to see Endo it took 2 weeks and he has been hugely supportive and unconcerned about low TSH. I sometimes think this site can be so very negative about the medical profession that it might put people off seeking help. We really need a good review of treatments and TSH which gets through to GPs to make them realise that while most people can be successfully treated the anomalies, like the non converters, need to be taken seriously.
I'm glad you've got a good endocrinologist. I also think some have become more sympathetic to their patients, especially if they have restored patients' health by prescribing other than levothyroxine (if it is causing more symptoms).
Unfortunately not a good endocrinologist. I am irritated that his constant nagging about my suppressed TSH and his threats that it would damage my heart seem to have now given him justification for reducing my Levothyroxine.
You may find NHS endo orders and obtains T3 result with ease because of being a specialist, but if a GP requests a T3 test it is not always done.
My surgery orders blood tests but requesting T3 and T4 not just TSH.
In the West Midlands our NHS GP is usually not able to get T3 tested by our lab . Many times over 20 years its been requested, but only T4 and TSH are tested. I assume different labs respond differently.
Here the max T4 on the scale regarded as normal is 19, whereas in Bristol or Gloucester if you look online slightly higher maximum levels are considered OK , and the BTF still states 22 as the maximum OK. Conforming to the given statistics can seems more important to medics than how a patient is feeling.
I have found the only way I can reduce my T4 is to do so very gradually. It took me a year to reduce from 150mcg to 125mcg while remaining reasonably well. I did that by initially taking 150 on 6 days and 125 on one day. After several months I decreased my dose a little further by taking 125 on Mondays and Thursdays and 150 on the other 5 days. After a few more months I then reduced to 125 daily without worse fatigue, whereas twice previously when my dose was reduced straight from 150 to 125 after 18 weeks I was sleeping most of the day as well as at night. Thankfully reducing my dose very gradually has enabled me to remain functioning as usual . A great difference. Mentioned just in case it may help another person somewhere . Of course it is important to have medical oversight and permission to do that. I'm sure a lot more research needs to be done. I think because endocrinologists also treat diabetes that tends to receive priority of interest over thyroid research as there is such a rise in those who have diabetes. That is simply my personal thinking.
I'm glad you have a helpful endocrinologist and send you my very best wishes for your good health in future.
This is what my surgery had to put up with but they’ve had to be very firm to get T3 and T4 now with TSH.
Sorry but why are you reducing your Thyroxine?? I was on 150mcg and felt okay. Certainly better than when reduced it!
I was diagnosed as hypothyroid in 1997 . Until a year ago I was taking 150mcg and felt well apart from noticing that just a a few times when concerned about a family member I had palpitations, and that prompted me to know to try again to reduce my thyroxine dose, combined with the fact my T4 had risen by one point to 22.7 since my previous annual blood test.
I've got used to acute sensitivity to heat ad cold over the years. I also have bowel problems and my need to take laxatives increased when reducing my thyroxine. I saw a bowel surgeon who advised me to take laxatives and use suppositories due to an internal bowel prolapse which he said it would not be wise to operate on. The good news is that by reducing thyroxine gradually I have avoided extra fatigue, brain fog and depression and I can still enjoy walking a maximum of 3 miles. I have had an ecocardiogram and my heart is fine, except I have been in permanent atrial fibrillation (AF) since 2016. So I am careful not to push my limits and pace myself carefully. My AF occurred while I had a nasty virus in 2015 which a cardiologist thought had caused that.
When I was diagnosed as hypothyroid in 1997 I was told I had antibodies that confirmed the diagnosis. That was 2 years after a minor head injury - a nasty fall caused by insufficient lighting in a city carpark. After being stitched in A&E my forehead wound quickly became infected the next day, I spent almost a week in hospital counteracting that infection, and my life has never returned to how I was before that accident. So with hindsight when I obeyed my endocrinologist and increased my thyroxine dose after many difficult days , the reason I had what seemed to be hypothyroid symptoms may have been that the underlying head injury affected my pituitary gland in my brain later causing the reduced production of TSH. We don't know ,and as I am now over 80 I prefer to soldier on without further investigations about that now.
For the last 20 years my TSH has been below normal, in fact almost non existent, but my T4 has been above the maximum for this NHS area of England of 19 . Therefore when I was in hospital for a different reason at the end of February a Consultant endocrinologist was sent for who told me very strongly my T4 was too high. It was 21.7, that is one point lower than the previous year. He insisted I must reduce to 100mcg immediately, and he handed me back to my GP for my ongoing care. Fortunately the GP knew well that I was decreasing to 125mcg , which I have now achieved, so shortly I shall request another thyroid test that includes T3 as well as T4 and TSH , because it is imprtant, as you know well, to confirm that my T3 continues to be OK before trying to reduce any further. Thank you for pointing that out as a result of your own experience.
Sounds remarkably like my experience! Palpitations can also be associated with hypothyroidism. Do you know the range of the T4 test that the doctor said was too high? Mine under the NHS is 10.8 - 25.5 so unless they’re using some other measure you are within range.
It was obligingly trying to reduce to 100 mcg when I got even worse constipation (which I thought was part of growing old). was ridiculous despite my mainly veg and pulses diet. Hair loss was spectacular and my toes were white with cold and poor circulation. All these have reversed ...I even sweat which I hadn’t done for years. I’m 72 by the way.
I won’t go on but would be interested in your thoughts?!
Best wishes.
This should pass as a bad dream. Sending you speedy recovery hugs.
You poor thing takecare of yourself,I don't know if you are in England but how do you see an endodontist sorry can't spell also I have just been told by my doc to take my omprazol at lunch timi have had an under active thyroid for 15yrs not once was I told to take my other meds later grr. Hope you feel better soon
Did you know Omeprazole is contraindicated with Thyroxine? Can hinder conversion to T3. I hardly take antacids at all due to dietary change but have been prescribed a different antacid for the few times I use one. Good luck!
Err nope I have been on them for 15years, when I stop I get all the acid back plus I have like an ulcer at the top of my throat so have to take them,but now taking them later in the day,I go for a blood test about Oct so I will see if that has made a difference
My next prescription, which won’t be anytime soon, will be for Lansoprazole. My surgery pharmacy told me just a couple of months ago. I have taken some form of antacid since very young (60 years). and just thought that was just me. Eventually I was on the miracle cure of Omeprazole and specialist wanted to up my dose all the time but never mentioned diet.
After painful kidney stones which can arise after Omeprazole I just changed diet. No processed food, ready meals (rare as cook from scratch) no white flour/ white sugar products, cake, biscuits, fizzy drinks, white bread, especially pastry.... Sourdough breads have made a huge difference.
Ads for antacids just talk about treating symptoms not addressing the cause and thus pharmaceuticals make millions!
Good luck!
Thank you 🥰
We used to give patients in hospital one of the "prazoles" to prevent ulcers until it was discovered it promoted them getting C. diff. and other problems. Proton pump inhibitors are not generally recommended long term use pubmed.ncbi.nlm.nih.gov/327... (histamine) blockers can work well without the side effects from PPI's. (They can also help with palpitations which occur after eating.)
Patti in AZ
Thanks for that link! So it doesn’t mention the contraindication with regards to Thyroxine and reduced T4 conversion but it does say it reacts with Clopidogrel which I take! Thankfully as I say I don’t take them anymore, unless I go somewhere the food is questionable.
It just annoys me that this specialist in gastric problems should have absolutely no grasp of the effects of diet. Just take a pill philosophy is not helpful and just makes a lot of money for pharmaceuticals!
Oh forgot which sort do you take then please
Do have a look at Poniesrfun link above! I learnt something new!
Morning catseyes235 sorry I cannot find the link help please
pubmed.ncbi.nlm.nih.gov/327...
😉👍
Thank you 🥰
Hi I have just read the article I realy did not understand it does it mean my omprazol or an inhaler? Sorry for being dense
en.m.wikipedia.org/wiki/Pro...
Hi cateyes235,so it has me thinking g do you know of any other meds or vitamins that might inhibits the levothrovoxin? Please
You should always read leaflets that come with your medicines, eg it says to take your medicine with a full glass of water at least half an hour to an hour before eating and drinking. This is from online blurb but think paper leaflet might have more.
Certain medications (such as cholestyramine, colestipol, colesevelam, antacids, sucralfate, simethicone, iron, sodium polystyrene sulfonate, calcium supplements, orlistat, lanthanum, sevelamer, among others) can decrease the amount of thyroid hormone that is absorbed by your body. If you are taking any of these drugs, separate them from this medication by at least 4 hours.
Hi yes I leave my other meds until lunch time, I take my levothrovoxin any time from 4am to 6am depending when I wake up and only have a cuppa when I get up at aboutc7 30 to 8 .thank you for that info it was kind of you to find out for me takecare
No idea lanky
I haven’t read it I just reposted it. However I’ve always understood PPIs to be omeprazole and alike. Omeprazole is used to treat high stomach acid. The problem is high stomach acid and low stomach acid present in the same way in terms of symptoms, so unless the diagnosis has been made, not assumption made, giving someone with low stomach acid proton pump inhibitors can actually make things worse. I was routinely given them without any attempt to diagnose me. It didn’t help and if anything made things worse, which can be as a result of both high and low stomach acid. When you’ve got low stomach acid I think the valve at the top of your stomach doesn’t close properly because it requires a high level of stomach acid to activate it. That’s my simplistic understanding someone else or Google my know more 😉
Useful to know omeprazole is contraindicated with thyroxine.
Even more useful to know I don’t need the stuff anymore!!
Yes, thats really good
What has happened is terrible. I am sorry it has come to this for you. Be good (do everything required of you) and mention the paper Diogenes found, or better yet get a copy and hand it over, to your cardiac consultant - you never know he/she might be aware and willing. I am however more than disgusted by the endos attitude/lack of ‘care’. HE /SHE SHOULD have sent you straight to cardio/A&E there and then, if he truly thought something was up. The level of ignorance and lack of care exhibited by this branch of medicine is truly shocking and it seems there is no end to their ignorance and lack of compassion. This person is a doctor first and foremost. He/she should have been able to examine you right there and then for the basics. I am so disgusted I really don’t know what else to say. However most ardent best wishes.
Thank-goodness your husband suggested you did follow it up. Get well soon.
Hope you make a speedy recovery and are back on your feet soon. Take care.
I don’t feel knowledgeable enough to offer my opinion or any advice, but I just wanted to say I’m so glad your husband wanted you to get it checked before your holiday. (I would have almost certainly waited until after). Sorry for what you’re going through, and wishing you a speedy recovery.
sounds like this Endo might have saved your life. How lucky to have found this, especially before going to a foreign country! I wish you well...please keep us posted!
I'm really sorry to read of your experience and send good wishes for your recovery.
I think this is a lesson to women that they often don’t have the classic heart attack symptoms. Thankfully your husband had you checked over!
Gosh, I am so sorry this has happened to you. It sounds as though that endo may have saved your life. This has really brought home the potential dangers of both hypothyroidism and hyperthyroidism and the importance of getting the dosage right. Wishing you a speedy recovery x
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