last night and this evening I've written comments - thought it would be added to the administrator's post but think I've attached to other members' posts. How do I make general observations without burdening particular members? I joined Thyroid UK yesterday. My comment last night was my life history, rather long - I got carried away as I recognised so much of what other people were writing about. Very re-assuring as over the years I thought I was becoming neurotic or beginning to put things down to my age. Frustrating as I'm generally fit and active on my good days.
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Dillongirl
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I just read some of your replies and I think you should add your story to your own thread so members can help and advise you. Just to add 70 isn't old these days and I am 60 and I certainly don't feel it. 😄
I have just been asking for the TSH level when told 'its normal' stopped getting print outs last year. My ~TSH 4.79 but I feel better than when it was 0.79 earlier this year and I got tingling pins and needles up my arms, neck and head every other day - this sensation was over my whole body during the last episode. I was sitting down and just had the instinct not to close my eyes - just had to keep my eyes open, then it passed and I could breath again. Very frightening - so I'm finding all this information from others very re-assuring - it gives me hope that I can manage the situation to enable a better quality of life for the rest of my life. Thank you for your reply.
Your TSH should be 1 or lower and your T4 and T3 should be in the upper third of the range. Also your vitamin levels need to be optimal for the Levothyroxine to work. Do you have any vitamin levels to share with us? We need B12, Iron and Ferritin, Vitamin D and Folate.
From reading all these posts I realise that I have to get more tests done. In 2018 By chance someone noticed my breathlessness whilst standing still. I thought it was a bad AF day and just wanted to get home to rest. I ended up buying Iron, Bcomplex and Vit D had my ferritin levels checked (unaware about ferritin - had been told previously by doctor that I wasn't anaemic ) my level was 70 - I'd already been taking it for 5 weeks or so and felt much better, energetic more breath etc. The following year it was checked again along with my thyroxine blood test and the ferritin had climbed to 130. Much the same earlier this year. My case is complicated in that I've had years of being well, then knocked sideways by symptoms that have been linked to my heart and age it would appear. Its only recently that I've made the connection between my dose and how I feel. From what I read my assumptions may be on the right lines - there is a connection but I may not have realised the connection is more complicated. I've made a note of the various tests and will get them done somehow to get a proper picture. There is so much to unravel it seems. Thank you for your reply.
Hi Lora7again, I'm on 75mg at the moment down from 100 but my story is complicated and I now realise that many symptoms I've had over the past 7 or 10 years are most likely linked to my thyroid. I don't feel 70 when I'm well that is what is frustrating me as I do believe Doctors and medical staff write you off after a certain age.
Yes I'm getting used to this site - just left the group when I wanted to log out . Re-joined of course but still can't find the log out button ha ha ha!!
Medichecks have Special Offers on Thursdays so keep an eye here on the News Feed for the alert.
Choose the Testing Bundle that contains TSH , FT4 - FT3 - Anti TPO and Anti-Tg - B12 Folate - Ferritin - Folate.
Often it is Low T3 that can affect the heart along with iron and other important nutrients.
You are not neurotic or getting old - you have made a good start in posting here where you will learn so much - I did ! I joined in 2011 after quite a journey. If you want to read about a member you can click onto their username and all will be revealed !
Some of your symptoms could be linked to low B12 - and it is possible the B Complex is not giving you enough. Please remember that a B12 test result will be inflated due to supplementing. Which brand are you taking ? Also if the B Complex contains Biotin it is advised to stop it for a week before testing as it can interfere with the procedure.
Thank you so much for taking the time to reply to my comments. I'm back now and want to concentrate on this problem. The B complex is Lamberts and does have Biotin; the Iron is Terra Nova - my situation improved drastically within one week of taking both. But I think it must have been that I was so deficient. One month after starting the Iron my ferratin was 70 - the past 2 years its been 130. I believe the band is between 30 and 300. !!
My next TSH blood test is 16th November. Earlier this year my TSH was 0.79 but I was getting dizzy spells every other day together with numbness. So my GP suggested reducing Levo from 100mg down to 75mg after two months my reading was 4.49 - I asked to be referred to the endocrine clinic to find out about the apparent fluctuation in a relatively short time. She told me she couldn't justify a referral on the NHS and that I was older and had other things going on.
Well, I have had 'other things going on' for the past 10 years (20 years hypothyroid in total) and do believe that most of those other things emanate from some inconsistency in my thyroid function. I have felt so much better since reducing down but just sometimes get a weird sensation under my sternum and at the base of my throat. This used to worsen and end up with my heart rate all over the place. Now it seems to remain just a sensation but it is unsettling due to my past experience.
My GP said I had a choice - either increase the medication or stay on 75mg and have another blood test in 3 months time. Hence 16th November. But this yo-yoing has been going on since 2007. I will follow up on the private blood test bundle so that I can present the results to her. I've made notes - thank you very much. It is with some relief to read all the similar symptoms that others contend with.
What I don't understand is that pre-diabetic people get all sorts of help to lose weight etc yet there appears to be some irritation regarding those with Thyroid problems.
I have had similar experiences with GP. I am at the end of my rope with it. Ambulances have to be called out by 111 and still I am in wait and see for a blood test in 3 months. You are not written off because of your age, I can assure you. I was left with an undiagnosed condition when I was 29. Lost my career, husband, hose. 17 years later I was diagnosed too late to cure it. Now 6 years going backwards and forwards with thyroid on top of Nero condition and it is like talking to a blank wall. levothyroxine is making me so ill, but no extra tests. Finally I bought private full range thyroid test that show I had autoimmune Hashimoto's. I have emailed this info to the GP and still no reply. I am on Levo, probably it is making me Hyperthyroid GP does nothing. This site has been an eye opener ofr me. I really thought I was the problem. Seems that the GPs have the issue. I find it really interesting how many people have to self care and pay for private tests and medicines. We have all been very badly let down. I am 55 years old and I have had the run around for 30 years. I can't believe this is another condition, where GPs let patients fend for themselves. Best wishes to you, we are no longer alone; we have all the peeps on here to help us.
Thank you so much. I am sorry about your run around. It appears to be quite common from what I've read so far. Thank goodness for this site/forum. My son suggested that I should read the NICE guidelines for hypothyroidism - haven't had a chance yet. Saw on the B12 info last night some reference to NHS guidelines. Must read it again. Would that be useful for you?
I am 70 years old but not elderly yet and I work to keep fit and well. Over the years its me who has made suggestions and have been sent for tests for conditions from early menopause, asthma, over production for adrenaline etc. Anyway, I'm on the case now taking a different approach.
This morning, I've asked for a print out of my last blood test in August and am about to write a letter to my GP asking which of the blood tests I can get on the NHS, which I'll deliver when I collect my results this afternoon. It will be interesting to see what sort of reply/response I get.
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My comment last night was my life history, rather long - I got carried away as I recognised so much of what other people were writing about. Very re-assuring as over the years I thought I was becoming neurotic or beginning to put things down to my age. Frustrating as I'm generally fit and active on my good days.
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