Long time, no post...an update

Hello again!

Im sorry i havent been active on here for quite a while now...No excuses either...i seem to have been living in a rather sullen world where i cannot be arsed to do anything except try to survive.

Im also sorry if this is a very long post ive a lot to catch up on.

Before i left here i was on t3 only, returning to work as a midwife, after 12 months sick leave, and managed 18 months. During that 18 months my health declined being totally exhausted, sore joints and muscles, very poor memory and cognitive functioning etc with blood results that were all, including FT3, way below range. Im not sure how i was actually alive and able to function at any level.

Then one day at work, last September, i couldnt remember how to care for the woman in labour i was looking after. Feeling exhausted, confused,emotional and vulnerable i went off sick again and remain off sick now. The occy health consultant where i work demanded i find medical input as i was self medicating t3 under Dr P at the time...My heart sank...for that is what i had spent the last 6 years doing...skipping through GPs and useless endos'. I eventually found a CF clinic in nuneaton where i was referred on to a fantastic professor of thyroid health. This was the first clinic i have ever walked out of with a smile on my face! An NHS doctor who has undertaken research into adding t3 to t4, who understands the controversies in the diagnosis and management of this god awful disease...who understands that even a minor shift in the range of any individual can cause problems...someone who didnt freak out at me self medicating t3...he understood why and is prepared to listen...yes listen.

His plan was to re start thyroxine alongside my t3 and to try and balance the 2 drugs. Well im now on 175mcgs levo and 15mcg of t3, my bloods being at 'optimal' levels...ha! The NHS t3 is very much stronger than cytomel which was evident from the first pill i took! I am still on the usual suspect supplements too. Well despite all that hormone i donnot feel much better...i am still tired from morning to night, have very little stamina, am cold and stiff and pretty miserable ...tho i have found depression has lifted alot since starting the levo. I have had one week of feeling better overall then a sharp decline . I find it hard to tolerate more than 15mcg t3 as I also have palpitations and a profound tachycardia on exertion...by exertion i mean walking up a staircase or mild slope. I tried a gentle swim and found i lost all feeling in my legs , felt like i was about to pass out and a serious case of the jitters which was resolved by sipping lucozade. The second attempt i swam 2 widths before i needed to leave the water. So i'm to take Beta blockers now, to stop my heart lapping up all the hormone and to push it to other places of my body that demand it...im entirely not sure how this will go? Ive also to start melatonin to encourage a better quality of sleep...he does hanker on about sleep. I actually sleep on average for 10-11 hours and still want to stay in bed all day...so maybe it is quality not quantity. The next stage is adrenal tests, diabetes and a thyroid hormone absorption test...cant wait!

Im about to lose my job as a midwife so i have some serious life decisions to make. Taking my salary out of an already tight budget fills me with fear. My artwork is the only option i have...which im glad of....but isnt a quick financial fix. If anyone would like their horse, dog or cats painted please let me know! Hubby is supportive tho its taken a while ...

I have also discovered my 16yo is 'sub optimally hypothyroid' by GP, with a TSH of 6.8 and FT4 of 16....i lost the plot to be fair...but was reassured by my doc that he would help to sort things out. I wonder when he will regret the day he said i could email him any time with issues etc lol.

I have been thinking about you all recently especially those ive had online natters with...i hope you are all improving? To be fair Im broken but i guess i have to continue the good fight :(

Sending virtual hugs K xxxxx

21 Replies

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  • Even though you have found a very good doctor, thankfully at last for you, I do wonder if you might be intolerant of levothyroxine. Some people are.

    Would your nice doctor consider a trial of T3 alone (although I'm not keen on the UK T3 myself). The fact that when you were on levo before your T3 was very low and you were very unwell shows that you weren't converting T4 to T3. Did they (have they) check your Free T3 which is the most important as we cannot function without sufficient.

    If they check your GP and prescribe T3 only, as I say, on a trial basis initially, you might find it of benefit to you.

    hormonerestoration.com/Thyr...

  • Hi Shaws...yes i was on t3 only for around 18 months but got to a point where i couldnt raise it any more without cardiac issues. He feels i have an enzyme which is hindering conversion however my levels were so low that he felt it worth restarting the t4. My gp now prescribes the t3 but it is bloomin strong!

  • Thank you so very much for posting again - I am sure many of us have missed you.

    Getting some support from "inside" is a huge breakthrough, and long may it continue. Doing it all on your own is so very tough.

    Rod

  • Hi Rod! Thank you! Yes, at the time occy health demanded i find nhs help Dr P was ill in hospital so i was a bit lost. I still feel i have a battle ahead....some things he says ring warning bells ....i tried discussing the saliva test with his registra...lol....thought she was going to beat me with a stick....short synthacen it is then....again....result already predicted lol

  • baby (;)) if you've been deconditioned by being so exhausted then it takes some effort to get back in shape. I know. I was so bad at one point that walking 200 - 300 meters and return was as much as I could do.

    But it takes time and perseverance. I kept it up every day, walking and eventually, it took three months, I was able to walk 5 km every evening. Then I gradually worked up to 70 km per week, then to hiking and etc.

    Now I'm toast again because my GP lowered the T4 dose a few years ago. Not sure how up to it I am to start the whole palaver all over again. My enthusiasm for rehabilitation isn't there anymore. But at least I feel better in myself. Just a cranky old bag.

    So, go for it. Just walk. It's a lot safer at this point than swimming. And reduce your carb intake. The fact that Lucozade helps means your blood sugar is taking a dive. Reactive stuff. Minimize bread, pasta, rice, sugar, etc. Shift the diet to lots of cooked and raw vegetables, meat, fish, fermented dairy and seafood.

  • Hi Gabkad....when you walked ...how did u feel after? We have a lampy lab who needs a lot of exercise. The best i can do is 2 miles around the village....but it is at a high cost. Im tired before i go....exhausted by the time i get to 100 yard mark...but forced on by knowing the dog needs the walk....so i get irritated and shouty due to his pulling on the lead and constant stops for sniffing....afterwards im done for the day. So im a cranky old bag too! I do that most days and it doesnt get better. Im starting to reduce carbs now x

  • I'd feel like dog poop after going for a long walk. Just crash. But I've never had the sort of heart issues you are reporting. Had palpitations even lying down when thyroid meds were underdosed. Thought I was going to die. The doctor is correct though. Exceed the amount needed and I get global anxiety and can't get to sleep for heart thumping. I think when we are low for years, it's difficult for the heart and other organs to get back up to speed. Kidney function, bladder function.... not just bowel function....

    Maybe you need a sleep study done as well. Sounds like you don't get restorative sleep. I had one done in 1998 which showed that because I was in pain, I was not sleeping even though I didn't know this. I just was so tired all the time and wanted to crawl back into bed soon after getting out of it. I've been taking zopiclone since 2001 because it's the only drug that helps my back spasm pain so I can sleep. But being a midwife, not sure how that would work for you. Babies come out at all hours. At least Zopiclone has a short half life (there's another pill out there that is even shorter) and I don't get that hangover feeling the next day. Melatonin gave me an awful hangover effect.

    I don't know how old you are, but I've been on topical HRT for a long time as well. Waking up multiple times during the night from hot flashes was also interfering in sleep quality.

    Years ago I was also getting into hyperinsulinemia from eating too much junkfood. Like pretzels. Sounds from your description that you are getting this as well. It takes months on a low carb diet (low glycemic index foods for carbs) to re set the pancreas to behave better. But it can be done. You'll have cravings for a few months, maybe even a year but then things settle down and it's comfortable.

  • babycatcher7572, I would be very interested in learning more about what a "thyroid hormone absorption test" is. I have never heard of that one. Please keep posting about your experiences. I am hopeful this doc may actually treat you and not the tests. PR

  • Hi....im about to have a short synthacen test soon. At the same time they take the first blood as well as testing cortisol they take thyroid levels....i then take my meds....and when they take the second blood draw...they take another thyroid level. I feel there are a lot of variables which could skew this test. I dont think it is a routine test just one the doc thought might be worth a try. The normal absorption test invovles the same routine but u are given 1000mcgs levo but he didnt think this was necessary especialky as my tsh is suppressed x

  • I can see you are on the usual supplements but I wonder if your iron and ferritin are at good levels. These are the two that always nosedive with me, unless I keep up the supplement and your symptoms remind me of mine when I am low. I too am on NHS T3 and Levo. Like you I find T3 very powerful and I cut mine up into 5mcg crumbs and only ever take 5mcg at a time. (I was also on T3 only for 10 months but reached 60 mcg and still felt unwell, so gave up and returned to the combo). I am definitely better for having some Levo, although I am really desperate to succeed with NDT but cannot make it work for me. I realize it is just another trial for you to source it but have you tried any of the NDTs? Maybe you would do better on it? Would your new doctor prescribe a trial for you?

    Sorry to bombard you with my thoughts but these are things you perhaps have not tried and might be worth looking into. I hope you get the help you need soon.

  • Thank u.....i am letting this doc run his course before i mention ndt. I have armour waiting in the cupboard.

    i could only get to 37.5 mcg cytomel....

  • If you are a poor converter, then adding t4 is not a wise thing to do. How were you raising the t3? How soon and how much? Have you been checked for Iron/ Ferritin deficiencies? Cortisol? I'm sorry if you have done all this already..you must be very frustrated and horribly upset.. I really do understand. I have been ill for 5 years. t3 only is not working yet. I also am unable to raise.

  • Hi Faith....raised the t3 5mcg at a time 2 weeks apart...i have been checked for ferritin cortisol but not recently. Last salivavtest was 2012...showed adrenal exhaustion...no gp or endo would even acknowledge it...sent for short synthacen as i was creating....of course it was normal. Am taking ferrous fumerate....will ask fir an iron panel when they next drain me of blood....pah

  • I wish i knew how to direct you. Are you symptoms typical hypo or just mostly exhaustion? Maybe something else is going on. I don't know if adding t4 is such a good thing. Dr. Lowe who cured all his Fibromyalgia patients said t4 was a prohormone which is only useful if converted. If you feel worse, i would get off of it. I am seeing people improving on t3 only even after 3 years, maybe 18 months wasn't long enough for you?

  • I got terribly weak and ill on 62 t3..found out my Liver Enzymes were high, Creatnine too low, Blood Glucose high..i was toxic and had to cut way back.. Odd thing was my heart rate and bp got very low, even tho i was totally overmedicated.

  • To be honest Faith ive got my doc scratching his head too. Wheni was on t3 only i felt exhausted but couldnt raise it. Yes hypo symptoms...fatigue...exercise intolrance, feelibg tge cold, stiff muscles n joints. Im inbed at the moment abd my feet are freezing lol. I start a beta blocker today...kill or cure huh? Thank u for yiur advice ...it is much apprecciated xxx

  • Do you have Hashimoto's Disease?

  • No...antibod free x

  • Did you have both antibody tests done? Do you know why your thyroid is low then? Maybe the answer to on going issues is in that answer. What is your TSH like? Have you had an MRI of the Pituitary?

  • Yes both negative. My tsh is suppressed. Im not sure...doc isnt sure either. No mri as yet ...i do wish they would tho

  • Would it be helpful to cycle T3 , 3 or 4 monthly on slow stop/start regime?

    I do this and find T3 actually knocks me out some days couple of hours in. Due to my age I can't take too much but my temps seem to be lifting longer term and cycles is the way for me, I think.

    Strange- but I get no feedback from anyone in the NHS but they at least give me 40mcgs daily to trial. Took long enough. I don't want to be on it for life- so trying to rekindle my metabolism, as for Wilsons. My consultant says he hopes to learn from my exp. Not an Endo, obviously..

    Not a diease - but a syndrome with typically atypical symptoms to be expected! :/

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