7 months post-thyroidectomy blood test question?

[Mac64]

If anyone has any thoughts or advice, I would be most grateful, so many thanks in advance!

Basically I am questioning my stamina and "thyroid" health based on recent blood results. As always, the NHS gp is only able to test TSH level (see below) but like so many people seem to experience, I am certainly not "bouncing back!" with energy after 7 months of recuperation and weight-loss is almost at a standstill. I have admittedly returned to a very stressful, full time job which I know will not be helping in the least, but I'm probably just hoping for some support here as I certainly get little or none from managers and employers who seem to have very little time for anyone who has a misunderstood condition like this!

My GP thinks I am expecting too much of myself and that I must wait until energy returns (also reminding me that I am "not 21 any more!") but I did not go through a thyroidectomy, papillary cancer and many months of horrible symptoms to just settle for this.

The Endocrinologist I don't see until August and I have little faith in anyway, so if anyone is able to comment, I will be very appreciative, thanks!

Results:

TSH 0.41 (0.27-4.2 U) which in my opinion reflects my low energy/scraping through to the very low end of normal range? Endo says they will not adjust medication until TSH is below 0.1!

Everything else was "normal" other than these, which were "routine":

ALBUMIN 51 (35-50)

RBC 4.87 (3.8-4.8)

HGB 154.0 (120-150)

MCHC 352 (315-345)

I suppose I am asking ~ should I just accept that the TSH level, as reiterated by the GP is in fact "within the normal range" and that I am clearly going to take longer than anticipated to recover to a better energy level and get some zest for life again? Should I have the private blood testing? (for T3 etc as recommended by many on this forum) and if anyone else has had similar ongoing fatigue problems post thyroidectomy, have they taken things into their own hands?

It is exhausting enough trying to recover without having to demand this, that and the other. I just wish I felt a whole lot better than I do.

Thanks for reading and all the best out there!

[Nanaedake]

Having a thyroidectomy is a huge adjustment for your body but I think you should be feeling a bit better than you are by now. I don't think your doctor has been particularly helpful expecting you to be patient on your recovery when you need to hold down a demanding job.

We often see on this forum that doctors say everything is normal after blood tests but when people post the actual test results along with lab ranges their results are not optimal. When we have lost a thyroid or it's not functioning properly it seems that many people end up with low nutrient levels which may be in range but very low in range. Although this may not be a problem for people with normal thyroid function it does seem to be a problem for people with thyroid conditions.

If you've got a copy of your actual blood test results along with the lab ranges, then post them here for good suggestions.

I don't think your thyroid levels are the problem. Although your TSH is low in range, a lot of people feel ok when their TSH is around that level. I can't advise on T3 as I don't take it but others on here would say that people who have had a total thyroidectomy need it. However, I think it can be a good idea to optimise everything else first and then see if you need it because it's become more and more difficult to get it on prescription if you're in the UK.

Did you lose parathyroid glands during the surgery? Have you had symptoms for low calcium checked or have you been prescribed calcium and vitamin D3? I would not worry about weight loss, it's more important to get your nutritional levels sorted out and do good bone protecting exercises. Carrying a little weight is protective against osteoporosis which is a risk of low calcium levels.

I do think that doctors are generally clueless when we're passed over to them after thyroidectomy but you'll have to work with your doctor to try to sort this out. I would write down all your symptoms and check out whether any of them correlate with low calcium levels. I don't know if you're male or female but if female then calcium levels are critical when eostrogen levels drop. If male, it is still important for good bone health.

Yes, I had fatigue and a lot of other problems for 7 years after thyroidectomy but found out the levothyroxine in the UK was faulty prior to 2013 which was part of the problem and then discovered low calcium, was never picked up which is why I'm suggesting you check it out.

I do agree that thyroid cancer is a little understood condition and employers are very unsympathetic whilst colleagues with breast cancer got great sympathy, no questions about time off and made a good recover, in the main, I found little concession made by employers and medical staff seemed to think thyroid cancer was trivial too. Although little understood the thyroid is central to the body's function and it's not easy to live long term without a critical part of the body that affects every cell.

[Mac64 in reply to Nanaedake]

Thanks so much for the reply, Nanaedake. I know it’s a huge adjustment. I had a colleague who said it took her a full year and more before she felt reasonably normal again, so maybe I need to be more patient.

As far as T3 goes, even the endocrinologist is reluctant to test it as it can’t be prescribed (here in Scotland) even if the result is abnormal!

My calcium levels did drop post op and I was taking supplements but they are “normal” now too.

Unless I ask, my gp is very reluctant to do blood tests, so this is why I’m questioning whether more detailed private tests would give me some peace of mind, but perhaps you become over cautious when you feel you’re not being listened to or supported.

I am female so am aware of the importance of good bone density /menopause etc. Interestingly, I’ve had extremely painful, fingers since the operation and gp has diagnosed osteoarthritis. I questioned whether it was linked to sudden change in calcium post op but was told no link?! It seems there must be a connection, in my opinion!

[Nanaedake in reply to Mac64]

Oh, that's interesting, the end knuckle in my fingers started swelling up and became very painful after I had my thyroid removed. I'd never had any problems with my fingers before. My doctor diagnosed osteoarthritis too but personally, I think it was a lack of vitamin D3 and low calcium which were not addressed by NHS. My fingers stopped swelling when I started taking vitamin D3 and began swelling again when I stopped. I was convinced there was a link with thyroid too but to be honest I really don't think the doctors know because I don't think there has been any research on the sequelae after thyoidectomy because there isn't any money to be made from it. We are quite a small group who get thyroid cancer each year so no big sales I guess.

All the information says that if you have one parathyroid gland left after thyroidectomy that gland will do the job. I don't know if that is true or if there has been any real research into longer term effects. We lack calcitonin too and I'm not sure if anyone knows exactly how critical its role is.

I believe that bloods for calcium can be normal but you can still have a deficit in calcium which will not show up in blood tests due to the fact that your body will steal calcium from bones in order to keep your blood levels balanced. I have read that calcium is the most abundant mineral in the body and that it is so critical to your brain and heart that your body will take it from bone stores in order to provide enough for vital organs.

I would keep an eye on your calcium intake in food and perhaps increase the amount of calcium rich food you eat by making sure you eat some calcium rich food with each meal and ensure your vitamin D level is not just sufficient but really good. It needs to be mid-range to be optimal. Get a copy of your vitamin D results and check they are mid-range. Your doctor will most likely say they are fine if anywhere in NHS range but on this forum, many have found they need really good levels to feel well. I would also ask for a DEXA scan in a couple of years and so you can check your bone density levels. I believe I was untreated for low calcium for years and should have had a DEXA scan a good few years ago.

This article explains how some nutrient deficiencies can cause a number of symptoms and links calcium deficiency to thyroid disease. news-medical.net/health/Cal...

This article suggests a link between low calcium and anxiety.

tranquilitylabs.com/calcium...

NHS document on calcium deficiency - not specifically for people with thyroid conditions but good information and pause for thought?

whittington.nhs.uk/document...

[eeng]

I am confused by your endo's comment. I assume you are taking no thyroid medication at present. In which case, now that you have had your thyroid removed, you would expect your TSH to be rising, not falling below 0.1. TSH, as you probably know, stands for Thyroid stimulating hormone, which is secreted by the pituitary gland to tell the thyroid to produce more hormone. You don't have a thyroid, so your thyroid hormones are now probably very low, and you would expect your TSH to be rising. Your doctor and endo should be anticipating a high TSH and preparing to prescribe you Levothyroxine to keep you well. Low thyroid hormones make you feel very tired and stop you from losing weight.

Of course if your pituitary is not behaving as it should your TSH will stay pow and your doctor will be none the wiser. You really need a comprehensive thyroid test to check FT3 and FT4 as well as TSH.

Anyone with thyroid issues can become very low in Vitamin B12, D, Folate and Ferritin (stored iron). You should try to get your doctor to test these and you should take supplements to bring them up to healthy levels. This will help you now, and when you start taking Levothyroxine it will help your body make best use of it.

As for your doctor telling you that you are getting old (basically) I have heard this before and find it very worrying. Your doctor is telling you that "ill is the new well". If he (and I'm pretty sure it is a he) was told that being too tired to work, impotent and unable to drive (for example) was how he was going to feel from now on he wouldn't accept it. You shouldn't either.

I hope this helps.

[Mac64 in reply to eeng]

Thank you eeng ~ just to fill you in, I am taking Thyroxine (100mg daily) but still not feeling the energy returning ~ I am now quite overweight and my GP has acknowledged that but does not link any obesity to thyroid issues! (I have heard this so often before!) I am very active and eat extremely well ~ I basically follow Michael Mosley's Blood Sugar diet which has proven results from counting calories and keeping blood sugar level so I really don't know what else I can do! It is so frustrating that the Endos won't even test for FT3 and 4 as they are indicators that help to form a picture ~ even they seem reluctant to address symptoms and merely go by the TSH results, so I guess my next decision will be to have the tests done privately to see if I can fast forward some of the lost months, even years now, of this frustrating condition.

I will include B12 and Folate in the tests as they were not tested in what I was told was a FULL BLOOD TEST! Ferritin was 54 (13-150 U) but it does say under that result that " A normal Ferritin does not exclude iron deficiency!" ~ so another thing to consider!

And so it goes on........

[Nanaedake in reply to Mac64]

To rule out iron deficiency anaemia you need a full iron panel. Thyroid UK website list reliable laboratories for private blood tests. Many here use Blue Horizons and Medichecks.

[LAHs]

My advice would be to forget expecting meaningful blood tests from your doc, that is just going to be a source of frustration. Firstly your TSH should be low after a total thyroidectomy (TT), a high count would be giving any lingering cells the opportunity to "spring back to life" again which would be OK but they might be the cancerous cells. Immediately after a TT you should have been on T3 only for about four months, then moved to Levo or NDT. Levo. is simpler all round if it works for you, meaning so long as you are a good converter of T4 to T3.

Go sign up for a complete thyroid panel through a private lab, adjust your thyroid meds until you feel well - keep an eye on your blood pressure. This procedure is a bit expensive to begin with but you get to feeling well faster than if you rely solely on your doc. The other thing that is difficult to think about is that you might have to change doctors. Many docs (or Endos) are not well educated in thyroid matters and you will be the one who suffers until you realize that you need another doc.

Unfortunately you will need to educate yourself on this subject in order to keep your health on track. You have made a good start by joining this forum. For what this is worth, I had T3 only after my TT and I felt the best I have ever felt. I was switched to Levo and I had to fiddle with my dose for about a year (reaching 135mcg) before I noticed I generated enough T3 to feel well. Raising your Levo and taking Selenium (the catalyst for the T4 to T3 conversion) might do it for you. btw I take my Selenium via 2 Brazil nuts per day. The only times I have felt ill was when my (stupid) Endo decided to reduce my successful dose of Levo because my TSH was too low. After a while struggling with her about this issue I was forced to find another Endo - who fortunately was more educated on the subject and let me go on NDT following my request. My Endo now is good and I have had him for three years, he is my third Endo. My current GP is OK, at least he does what I ask, I don't think he completely understands what's going on but at least he listens, learns and doesn't argue, he is my third GP ( My first, the best one, retired).

So these are the kinds of things you can expect, try not to get too stressed out if you run into any of them.

[Hay2016]

Hi. I had follicular and was put on 125 levo. My tsh is suppressed on that dose- does papillary cancer not need suppressed tsh?? I’m surprised that they’re not increasing to drop your tsh more. Did you have iodine ablation too or just thyroidectomy. I put on 2 stone and also can’t shift it despite running myself into the ground but all you’re told is can’t be lack of thyroid. 🦋 chin up. I would order t3/4 tests. It tells us a lot even though gp/endo don’t acknowledge that.

[Mac64]

LAHS and Hay2016 ~ thank you for your comments. It scares me how much information is available here and how little the GPs seem to know. As it was pointed out to the Scottish Government recently, there are multiple drugs and vast amounts of research available to treat Diabetes and only ONE DRUG and hardly any research in comparison, for Thyroid patients. Anyway, that will take years of battling, so I will take your advice and get myself tested privately. It really shouldn't be this way ~ we pay our National Insurance contributions for a reason......and some of us get to the end of our tethers and finance our own surgery too!!!!Thank you, I will go ahead and check back on the forum later for more insight and advice.