I'd really appreciate some help understanding my ultra sound, my blood results and endo comments.
I've recently had an ultrasound at my local hospital. It took, quite literally one minute! I was told at the time, every thing is normal except my thyroid is quite small. I asked what that meant and was told it might be due to age. I am 68.
A follow up report said the same thing. My endo told me that it is impossible to have been hypothyroid and taking thyroid meds for twenty seven years and have a " normal" thyroid. He added the result was abnormal because it was normal. He told me he was not sure what to make of that. I did not have the further die test - my endo told me this is rarely done these days due to frequency of a bad reaction to the die used.
Has anyone else come accross this before? My problems are still being investigated as no answer to my problems is has been found.
My eostrogen came back as "normal" because it was in range. The endo told me it was abnormal because I had a late menopause it is too low. He wants me to take Menoserene. Has anyone tried this?
He also wants me to take sea kelp to build up my iodene which is probably low due to me being a vegetarian. I am worried about this as I did take it years ago and it really upset my tummy.
The endo agreed with me that neither of these problems really fit - I am unwell for weeks then better but not well for weeks. This cycle has been going on for almost seven years. Each time I am unwell, I am worse than the time before. Each time I am better, I feel worse than before. During the first lock down I was really well and back to how I used to be. It lasted ten weeks. I've been really unwell since. I'm really tired - often going to bed for 2 to 3 hours in the afternoon. I'm always starving and have gained 12lbs since late June. I'm very lethargic. This time, I've had breathing problems. It's very difficult for me to do anything as I just crash after twenty minutes.
This was following twelve weeks of being really ill with shingles. I had two lots of anti biotics and two lots of anti inflammatory drugs. Prior to this I'd been diagnosed with a persistent sinus infection and had three lots of anti biotics. It was not a sinus infection but another hypo symptom!!
I asked about the possibility of my having a thyroid infection. I was told, one type is completely ruled out by the tests that I have had but it is definitely possible that I have the other kind. He added that an infection could fit with the cyclic pattern of my problems.
I've been told to have ESR and CRP blood tests every month for 3 months. If the results vary, it confirms I have an infection. My next test is on Friday morning.
On the 4th November, these were tested.
CRP was 2.8 ( <5.0 ) and ESR was 4 ( 9.0 - 20.0 ) Below range. Nothing was done . Serum Potassium 5.6 ( 3.5 - 5.3 ) Above range. Retested and normal
eGFR using creatine was 79 ( 90.0 - 200.0 ) below range. Retested was exactly the same result. Nothing further done.
Red Blood count 5.17 10*12/L (3.85 - 5.15 ) Above range. No action.
Free T3 6.56 ( 3.1 - 6.8 ) This surprised me as I' d been told to take 30 mg of liothyronine a day instead of my normal 60 for five days prior to blood drawer. By the day of the drawer, I was very hypo and feeling really ill. For years, my blood results have not reflected how I feel. Top of range yet loads of hypo symptoms!!
TSH is suppressed and there was the usual comment about this suggesting over med.
I have had several lots of blood tests done over the last four years. Each time more tests are out of range. Usually nothing is done except for potassium. Three times it's been above range and then normal on retest.
Vitamins etc were all tested. Whilst I am really working on raising them they are well in range now.
Am I right in thinking the above out of range results suggest an infection? The endo said he was not allowed to treat me for an infection unless it's confirmed I have an infection, so I have to wait three months!!!
Any advice or suggestions is greatly appreciated.
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dizzy864
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Sounds to me like you have Hashi's. Have you ever had your antibodies tested?
Are you still taking T4+T3? How much of each?
What are your nutrient levels?
How did you do your test? Did you do it early morning - before 9 am - and fasting? Did you leave a gap of 24 hours between your last dose of levo, and a gap of 8 to 12 hours between your last dose of T3 and the blood draw?
I currently take 55mcg lio ( I'm actually prescribed 60 ) plus 125mcg levo.
Yes, I did follow the advice on this site prior to the blood draw. The draw was at 08.30.
I used to think that hashi s might be causing my problems but now I'm not convinced. I think with hashi s it's possible to vary medication and at least most of the time be well. I am never well. Sometimes I am very definitely hypo and at other times I am definitely hyper. I've been trying for a couple of years to vary my meds accordingly. It doesn't work. When I'm hypo even a slight increase makes my hyper - usually the first sign is sweating. When I'm hyper and reduce meds I become really hypo - usually shaking and generally feeling odd. A lot of the time I don't feel hyper or hypo, I just feel very unwell. My gp suggested eighteen months ago that I might have thyroid resistance. She explained that that means that some of my receptors do not work. This results in some receptors getting too much T3 causing hyper symptoms while other receptors don't take up enough causing hypo symptoms.
On 4th November, my B12 was 463 ( 197.0 - 771.0 ) This is usually higher but I stopped taking my B complex tablet nearly a month before the draw - the blood test kept being put off due to a supply issue at my surgery.
I used to think that hashi s might be causing my problems but now I'm not convinced. I think with hashi s it's possible to vary medication and at least most of the time be well. I am never well.
I don't really think that's a very good description of Hahsi's. And, in any case, it would vary from person to person.
But, what about your labs? With Hashi's you would sometimes have high Frees, when having a Hashi's 'hyper' swing, Then, back to hypo-type labs. But, have you ever had your antibodies tested?
Sometimes I am very definitely hypo and at other times I am definitely hyper. I've been trying for a couple of years to vary my meds accordingly. It doesn't work. When I'm hypo even a slight increase makes my hyper - usually the first sign is sweating. When I'm hyper and reduce meds I become really hypo - usually shaking and generally feeling odd.
Thing is, though, an awful lot of symptoms can be both hypo and hyper symptoms. Which is why we need labs to back up the way we feel.
My gp suggested eighteen months ago that I might have thyroid resistance. She explained that that means that some of my receptors do not work. This results in some receptors getting too much T3 causing hyper symptoms while other receptors don't take up enough causing hypo symptoms.
I think your gp is a little confused. That is not really an explanation of Resistance to Thyroid Hormone. That is how normal hypthyroidism works.
When there's not enough thyroid hormone to go round all the cells, the body switches off certain receptors in areas it deems less important for staying alive. Of course, it would do that to the brain, or the heart. So, yes, some receptors could be getting to much, and others none at all.
But, as you slowly increase your dose, and the body becomes confident that there is now going to be a steady influx of thyroid hormone, it switches these receptors back on again, one by one. By the time you get to the kind of dose you're taking, you should be past that stage by now, and the vast majority of receptors should be getting what they need.
With RTH, the receptors are resistant to the hormone, not switched off, but not taking the hormone in easily. So, you good levels of hormone in the blood, but still have hypo symptoms. And, to over-come that you need to flood the receptors by taking very high doses of T3. I could be wrong, but I don't think you switch from hypo to hyper with RTH.
I rather think your next step should be to get your antibodies tested, if you haven't already. An under-sized thyroid really does suggest Autoimmune Thyroiditis. Not that there's anything you can do about it, the treatment would still be the same, but at least you would know what the problem really is.
Hi, That was very interresting. I did have anti bodies tested three or four years ago. I think they were five in arrange under thirty. My gp has refused my requests to have them repeated. The endo did not suggest that I get them tested again. My u/s was no help - I was told at the time that my thyroid was a little small but that was not included in the report to the consultant. That just said thyroid was normal and no focal nodules. My endo was very surprised at the report. He thought it was not possible for my thyroid to be "normal".
Well, of course, you could still have Hashi's, even without high anitbodies. 20% of Hashi's sufferers never have them over-range. Apart from that, I don't know what to think. Sorry.
I've posted results above. I take high dose Vit D, B complex, zinc, Vit C, Gentle iron 20mg - the most I can tolerate at the moment. I also have magnesium in my daily bath. I did notice that the menoserene that I've been told contains these and one or two other things. I did not realise that levo contains iodine. I am very worried about taking sea kelp as it had such an awful affect on me years ago. I'm most concerned about my eGFR being so far below range and my ESR being so far below range. I wondered why these alone were not sufficient to at least start treating me for an infection. My doctor was not concerned about these but that may have been because she knew that I was paying an endo.
As a vegetarian you need a separate B12 supplement as well as vitamin B complex
Good you Remembered to stop taking vitamin B complex and any other supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
Low GFR can be linked to being hypothyroid....but your bloods suggest you are pretty well treated thyroid wise
No, I am not gluten free. Sometime ago I went gluten and dairy free for a couple of months. It made absolutely no difference for me either when I was actually gluten and dairy free or when I reintroduced them. I've also had a test for gluten intollerance and I am not. So for the time being I am not going gluten free. Being vegetairian makes it very difficult to eat out especially when we're abroad. Being gluten free as well would make it impossible.
Hi dizzy864 and I hope someone on here can help you and you soon feel better. Please could you tell me more about thyroid infection. I have never heard of this though I often have spells in the cold months of pain in my throat/neck area and feeling very unwell. No over counter remedies reach the spot and GPs brush me off as just a sore throat. Please could you tell me what your symptoms are so I can compare?
Hi, I've not had confirmation that I have a thyroid infection. I do think it is likely. I've had loads of blood tests over the past four years. Nothing has really shown up. Whilst I do accept my iodine and my eostrogen may be a little low, I can't see how that could cause the endless cycle of being very ill and then a little better. The endo agreed with me. I have weeks or months when I am really unwell. I sleep for ten or eleven hours at night and two to three hours in the afternoon. I'm still so tired I can't do anything but sit in a chair. I am really hungry all the time even though I am eating considerably more than is normal for me. I feel vaguely sick as well. Sometimes I am really cold and can't warm up whilst other times I am sweating a lot. I have lots of muscle aches. The whole of my neck is really painful - pain sometimes goes up into both my ears. If I stand even for a short time, it makes me incredibly tired. This time I have had breathing problems. I'm very short of breath obviously worse when I try to do anything. I can't breath through my nose. Breathing through my mouth causes my mouth and lips to be dry and uncomfortable. I will then wake up one morning and feel a little less tired. Over the next few days I continue to improve. I then have weeks when I am less tired, less hungry, less achy. As I eat less and am more active I lose a few of the pounds I've gained, but never all of it!! I'm never completely well just a lot better. I'm now up 17lbs on what used to be my regular weight. After a few weeks I wake up one morning and feel worse. Over the next few days I continue to get worse. And so this cycle has been continueing for almost seven years. I've tried varying my meds. It does help a bit but not much. I believe that I am very hypo although some of my symptoms can only be put down to being hyper. I have had no hair under my arms for six years. I have splits in my eyebrows. I have little hair in private area. I've had a lot of jaw pain - supposedly sinus infection but definitely wasn't. I get very confused sometimes maybe because I get so tired. All doctors ever do is tell me I am over medicated and therefore hyper. They insist I reduce meds. This I've done several times it very quickly makes me very hypo - shaking and feeling odd. The problem is my bloods show me at the top or slightly over range. It's always blamed on my "very low" TSH which is actually suppressed due to taking T3 for years. Thyroid infection is quite rare but not unheard of. I wonder if it's just not diagnosed.
Gosh dizzy I am sorry to read this, you are having a really awful time. You sound just how I used to be, but I am better now. Some thoughts - first, I'm wondering if the blood is being drawn when T3 is at it's highest (1 hour after taking I was told but don't rely on that because I can't remember who said it, I feel as if mine is highest after a few hours)
Also wondering if your vitamins or ferritin or anything is fluctuating interfering with your thyroid hormone uptake or conversion.
Or, are you drinking tea/coffee, eating or taking anything like iron too close to taking your meds so that they are not working properly. We need 4 hours between iron and thyroid meds for instance.
I am absolutely NOT blaming you, just trying to help you by thinking what could be interfering. One of my problems was that ferritin was too low, another was that B12 was too high (being vegan I supplement but had overdone it). Your ferritin is below mid-range and there's quite a bit on here about needing it to be mid-range to convert T3. Also, ferritin rises when we have an infection and I'm wondering if that might be why you felt better after the infection, perhaps once it had cleared and not making you ill your ferritin remained high for a while so you were better.
My thoughts on B12 are going to conflict with advice already given but it's important. Too high B12 can make us very tired (+ other symptoms), mine was too high when I first saw endo.
Most B vitamin complexes stint on the expensive Bs and are generous with the cheap ones. This causes an imbalance in the body and you need to take care to avoid it. I look at the %RDA of each of the B vitamins and find one where they are all the same or close, so, for instance all B vitamins 50% of RDA rather than say B1 40%, B5 100% etc. By the way I have been vegan for about 25 years and there is no naturally occurring B12 in a vegan diet yet I don't need any extra on top of the B complex.
I now take oestrogen and sometimes progesterone and think this has also helped with the tiredness you describe, sleeping for hours in the daytime, though I occasionally do have spells. Oestrogen makes us more sensitive to cold which you suffer from so since you fluctuate perhaps your oestrogen levels are up and down at the moment?
Once we are out of lockdown it might be worth asking a dentist about the jaw pain, some dentists are brilliant with this sort of thing.
Hi, Thanks for your reply. I always have the blood draw in accordance with advice on here. Before eating or drinking first thing in the morning. I allow 12 hours after taking T3 and 24 hours after taking T4. My view is that always doing this means results should be consistent. I absolutely agree with your comments on B complex. I've been buying mine in the States for years as there's is higher in B12 which years ago I was diagnosed deficient. When that ran out, I struggled to find anything here similar to it.I take Vibe Vitality, B12 is 250ug. I am further restricted in choice as I'm vege.
I have been taking my thyroid meds at night for years so yes there is four hours between them and any suppliment. I am finding it very difficult to raise iron - I used to react badly to even a small amount but am now up to 20mcg a day.
I was referred to a jaw specialist on the NHS. After a five month wait, I saw a consultant at my local hospital. After a very quick exam, he said I needed to buy a mouth guard. I was dismissed! I can't wear an off the count guard as I have bony growths in my mouth - completely harmless ! I looked into buying a guard, when I found it was over £250 to get one made, I didn't bother. The problem cleared up a few weeks after my increase from 100mcg to 125 of levo. So another thyroid symptom!!
A year prior to that I paid out almost £2000 to get help with my irritable bladder problem. I was told I needed to have collegen injected into my bladder to solve the problem. I could not afford to have that done privately especially as it needs to be repeated every eight months. I was transferred to NHS who would not recognise any of the private tests so I started from scratch again. They decided I needed different tests. I could n't do these within three months of taking anti biotics. As I kept getting anti biotics for the "cronic sinus infection", I had to keep postponing the tests. When I got the increase of levo my bladder settled down and did not need any tests or treatment! I can't understand with all my many issues, no one would accept it's a thyroid problem.
I will take the menoseren as it may help with the tiredness but it will not solve my actual problem.
Thanks for your reply dizzy864, I think I may have spotted something. You say you take around 55 mcg of Lio and that you take your thyroid meds at night. My endo told me to take my last dose of Lio well before bed-time, around 3.00 pm seems best, and, I have to split my doses into three, one first thing in the morning (I take it in the very early hours of the morning if I wake up), the second around 11.00 am and third around 3 pm. It has a short half-life, and, it's thought that it is during the night that we 'produce' our own T3. I'm wondering if taking it at night means it is adding to your own and serving you well through the night but then mostly gone by morning.You mentioned hunger I think and one of the ways I know when I've forgotten my dose is because I start to feel hungry, even if it's only a couple of hours since last eating. (I frustrate myself enormously because I'll have gone out for a walk with my daughters or friends then start to feel hungry and tired and realise not only have I forgotten the T3 but I've forgotten to put it in my pocket so will have to struggle on - then of course once home I eat because I'm hungry and only then remember the T3, too late!)
I'm really sorry for you with the jaw and bladder problems too but thank goodness they have settled down.
Shingles, plus the combination of several courses of anti-inflammatories and antibiotics will doubtless be contributing to general feelings of being unwell. A lot obviously has to settle down before improvement can be made. However, I note that esr is low, and rbc and haematocrit are both high. These are all things that should be tested again, as they could indicate the necessity of referral to a haematologist. Just keep an eye on those blood counts, and if they do not return to being within range, or go any higher, definitely ask for further investigation.
Unfortunately, I was unwell long before I got shingles. My esr and crp are now going to be tested monthly - only agreed after I asked for an investigation into whether or not I have an infection! No one was interested in it being so low which really surprised me as it was so far out of range.
Thank you for your reply. Once I finally got over shingles - pains lasted almost 14 weeks, I was really well. I was better than I'd been for six or seven years. I was back to how I used to be. Extremely active, lots of energy, sleeping only eight hours at night. Unfortunately it only lasted ten weeks until mid June. I've been very unwell since. I wondered if all the anti biotics and anti inflammatories fought an infection and that made me better. But they were not sufficient to kill the infection.
Hi, There was absolutely no chance of my seeing the screen. It was several feet away from me and turned completely away from me. The operator kept reaching back to see it!!
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