It's nearly 4pm and I'm not dressed yet. I have hardly moved all day. I need to go to work. It's ridiculous. I just can't get going.
Seeing endo on Monday. Hoping for a miracle because I can't work out what's going on with my blood tests (in profile). This is no life. This is miserable, a kind of torture. On top of this I have menopause issues (on HRT) and have to take a damn beta blocker because I have atrial fibrillation all the time. Most of the time I can't tell, but it means my pulse runs high, hence the BB.
I don't know how to cheer myself up or motivate myself.
Written by
FancyPants54
To view profiles and participate in discussions please or .
I do have some idea of how you feel because I went a couple of years feeling the same until I decided to self medicate. Have you considered trying NDT?
I tried T3 Tiromel for a short time and was just starting to feel better when my once random and not very frequent atrial fibrillation episodes started again and never stopped. I was so frightened at the start because they stuck me on 2 types of rate control drugs, left me on BP tablets and I felt dreadful. BP was so low I was nearly passing out and feeling sick and sweating etc. I never believed the T3 was at fault because I wasn't on very much of it (half a tablet a day at the time with levo) but the cardiologist and hospital doctors scared me and so I agreed to stop it. Of course the AF continued nicely without the T3 and has done ever since. I have to try it again. I see the private endo on Monday. I hope he will guide me. It doesn't really matter where my T4 is, my T3 is always too low.
I won't get T3 on the NHS because my GP tells me my results are in range and so it's not my thyroid. Shows what he knows!
I'm not an expert, I just know how I was. T3 was only just in range, T4 near the top. Iron and ferritin low, Vit D was 18. My heart rate was never slow, a bit high if anything, and I was very breathless. I was so weak I couldn't stand unsupported, often chair bound, sometimes feeling on the point of collapse. T3 was the answer for me and I have a very full life now. Your TSH is too high for most people taking levo. Have you spoken to/ seen this endo before?
Yes I have. This will be my third visit. We tried some other things to see if we could improve my conversion and uptake but then lockdown happened. I was supposed to see him again in the first week of lockdown so this is that delayed visit. I'm going to say to him this time that we've done what we could to try to improve things but my results make no sense and most especially my T4 and TSH make no sense, rocketing up with just 1 extra 25mcg tablet a week!? and TSH remaining too high. When I tried increasing levo by 25mcg a day last year under his instruction my FT4 went to 160% through range! It's time to add T3. Up to him whether he feels I should add Tiromel (which I have) or try NDT. I want to see what he suggests. I know he will add T3, he was recommended on here.
My Dad died in December. He had a very unpleasant death. He had terrible atrial fibrillation, out of control rhythm. He collapsed at home and they said he wasn't going to recover. But although they withdrew his medications and caused him terrible withdrawal symptoms for days, he fought on for 2 weeks. At one point they restarted some of his meds because he wasn't doing what they expected. But he was just left then really. He was in the middle of an acrimonious family land sale as a trustee. I had to step in and help him with it. He was even worrying about the sale as he was dying. I managed to visit daily even though not local. I work. After he died I did all the arrangements because Mum didn't want to do anything. I then gave her the best Christmas we could manage and after that it was the funeral. She was keen to start sorting out and getting rid of his things, which I was in the middle of (and found emotionally hard) when the virus erupted.
Before he got sick I was doing much better. I even managed to do a bit of decorating. I thought I was on the mend with the things me and the endo were trying. But his illness and all the stress really seems to have set me back. I got through it all without gaining a pound in weight (insulin resistance under control) and without ever saying no to duty calling. But once the funeral was over I sagged and then with lockdown and keeping my business going with everything being harder, and worrying about Mum who was shielding and fretting about work that needs doing to her house, it all fell apart. Weight has piled on and energy fled and I feel miserable and demotivated.
If anyone read this far, I'm sorry. I needed to get it off my chest.
Just something to think about if you haven't already.
I feel that there is more than one thing wrong, almost sure of it, so it's going to be like searching for needleS in haystack.
Have you or your Endo looked at Atrophic thyroiditis, you may need an ultrasound of your thyroid gland to see if it has shrunk, have you had one already?
The atrial fibrillation - I wonder if you have TSH Receptor Antibodies. Have these been tested?
Have you had your DNA tested with one of the major companies? If so look for PTPN22 gene see if you have AA alleles.
How is your conversion of T4 to T3? What happens in what sequence? Have you got a set of results that show this?
Is your vitamin D over 100?
Ferritin level about 70?
Magnesium, and zinc all need optimal levels.
What is your estrogen levels like? Are you taking any hormones?
I've been searching this worsening haystack for years. It's very upsetting now as I'm struggling to work.
I have not had an ultrasound scan of the thyroid no.
DNA was tested for Dio2 gene nothing else (these things are so expensive)
I don't know what you mean about the conversion. It's not good as shown by my blood test results but nothing has been sequenced.
In March vitamin D was 88 and I've continued to supplement through summer and be outside when I can. Ferritin is a struggle for me despite eating iron rich foods and supplements, it's always been a struggle for me. In March it was 64, which is good for me.
I take magnesium and zinc. Don't have a test result though. I am on HRT patches and oestrogen levels were tested yesterday, waiting for results. I've felt worse since increasing my oestrogen at hormone doctor's request. She said I had to get through a symptoms period of 6 weeks. I'm about 5 weeks in and it's made me really tired. It will be interesting to see what my levels are. They weren't good before, they had dropped to borderline.
I know. They used to say only in tablet form, but just yesterday a top HRT specialist went on record that it can happen with higher doses of transdermal Oestrogen too. So that will mean I need a dose increase on my thyroid meds too. Everything is linked. It’s hard trying to remember that as I go.
Forgot to put them on then. They were OK. Ferritin is a constant need, but it isn't too bad. Vitamin D is OK, could be better but not bad, B12 good, folate good. I have been monitoring them and supplementing them for years and years. I check about twice a year and keep taking the supplements.
I'm not giving up food stuffs of any kind. It's not something I want to do. I have done lactose free in the past. No difference and a miserable way to live. I love dairy. If I had felt amazing when I gave up gluten and diary for over a year and cooked all sorts of weird substitutes etc, I might have felt it worth carrying on. But the truth is it just made life difficult and didn't help me at all. I introduced them slowly to monitor. Nothing. I just felt better being able to eat normally again, and my husband who is a keen amateur chef, could enjoy himself again.
Yes I'm on Bisoprolol. I wanted to change to Nebivolol. GP agreed but wanted to wait for cardiologist input as I had a review appointment shortly after I spoke to him. Cardiology review was useless. GP took an ECG and blood test for me and we got the results to the cardiologists secretary. When the phone call came he had nothing.
I told him I wanted to switch BB. He said "they are all the same." And then advised I change to a calcium channel blocker. I wanted the different BB first.
To be honest I was so fed up with that appointment that I've done nothing about getting meds changed. I still think I should try the other BB first. How will we know if we just put me on something completely different?!
I was on Bisoprolol, then put on a calcium channel blocker. Lost sensation in my fingertips. Now I’m on Nebivolol I’m fine. Have you seen an EP yet? My arrhythmia nurse is very helpful too.
It makes me laugh when people on the patient forum talk about EPs and special nurses and the urgency to see them. There's nothing like that been mentioned for me. I have to make do with my GP and the cardiologist in Banbury Hospital once every 6 months or so. There's no one else round here. I'd be OK if I could get rid of the fatigue and the numb toes.
Go back to your Dr, lay it on thick. I’m sure he can get dispensation from the cardiologist to change you to Nebivolol. Enquire about an ablation, then you might get an appointment with an EP
My AF isn't that bad. Cardiologist has advised against ablation. He wants to do rate control. I must summon the energy to ring the surgery. I find it soul destroying having to do everything by phone. I like to see the GP so I can see his facial reactions. I don't see why he'd need dispensation. I just need to insist I suppose. I'm feeling a bit beaten. I wasn't like this a few weeks ago before the HRT increase!
I became tired as soon as I increased the dose. But it’s known that hypo patients can have their thyroid hormone depleted by higher doses of HRT, so it is often necessary to increase the thyroid dose. So I guess I’m stuck in that position. I need some T3 I think, my conversation is so poor.
I can’t offer anymore advice than you’ve been already given but just wanted to offer sympathy for your bereavement and you’ve been through such a stressful time , ... stress takes such a terrible toll on our health , it will take time for you to recover from all that happened ....
Wish you all best with Endo and hopefully things will steadily improve,
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Fed up
Fed up!
So tired and fed up!
Fed Up with Hypothyroidism...
Giving up
