Hello I am new here and a bit confused and overwhelmed but hoping to get some advice and reassurance from folks who have been walking the path of hypothyroidism.
To be clear from the outset I do not have a diagnosis and am not sure that this is where I'm heading.
For context, I had parathyroid surgery 7 weeks ago and one wonky gland removed. Just over 3 weeks ago I had blood tests which showed that my calcium and PTH are now looking good. My TSH was also tested and the result is 5.23 (0.35 - 5.5). I still have some symptoms which I thought were due to the parathyroid but now I'm not sure, namely fatigue, aches and pains, constipation and depression. I also have complex PTSD. My GP ignored the TSH as it is in range but I'm very wary as my parathyroid levels were often ok and I was undiagnosed for nearly 5 years. My endocrine surgeon however is on the ball and advises to re test the TSH but not until December and he mentioned possible treatment.
I am now highly anxious that I may have something else wrong with me, having been seriously unwell for 2 1/2 years now. From reading on here it seems that I may also need T4 testing and vitamin and minerals as well. My questions are:
1) Is TSH 5,23 too high? Many people seem very dismissive that an in range reading would cause symptoms and is highly unlikely to cause disease. My understanding is that is a reference point and not an absolute.
2) Is the TSH likely to settle given that I had surgery recently? Or is it too much to expect that it will fall to under 2 (which seems to be a more ideal number - but perhaps I have got this wrong?)
3) Can I have a retest before December or do I need to wait? I am so worn down by feeling so poorly but also think I might be a little impatient. I am more than happy to go privately for a full thyroid check.
I am aware that the mental health side may be playing a part in all of this but my GP is only too keen to attribute everything to this and also menopause (which was 10 ago). Due to the parathyroid issues I feel that once again I am being gaslighted. I would very much appreciate some measured and balanced input
Thank you in advance.
Written by
mbforever
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Many thanks for the detailed information and helpful suggestions. My TSH was tested on 5th September nearly 4 weeks after the parathyroid surgery. Test was 8.20am with overnight fasting. Since I posted I checked my medical records and can see that in November 2021 TSH was 1.35 so all ok at that point. I will probably get a full thyroid panel done privately in a week or so ,which will be 2 months post op ,to get more detailed information.
As far as supplements are concerned I am taking 250mg elemental magnesium, 3mg boron, 120 mcg vit K2 spray and 1000iu vit D spray each day. In July my vit D was 67.9 with no supplementing, I started supplementing shortly after that.
You mentioned an ultrasound scan for the thyroid but during my op the surgeon checked all 4 parathyroids and also the thyroid. Would an ultrasound show anything more? (sorry if that's a daft question).
1) Is TSH 5,23 too high? Many people seem very dismissive that an in range reading would cause symptoms and is highly unlikely to cause disease. My understanding is that is a reference point and not an absolute.
Correct. A health TSH tends to be much lower. but drs do not investigate further until it’s higher. Ranges are a guide, everyone has an individual optimal.
2) Is the TSH likely to settle given that I had surgery recently? Or is it too much to expect that it will fall to under 2 (which seems to be a more ideal number - but perhaps I have got this wrong?)
TSH can fluctuate eg daily / influenced by hormones & factors so it certainly possible to lower. under 2 is common value.
3) Can I have a retest before December or do I need to wait? I am so worn down by feeling so poorly but also think I might be a little impatient. I am more than happy to go privately for a full thyroid check.
Drs may say labs / policy limit the pace of testing. So if you have option to privately test I would recommend it.
The TSH thyroid stimulating hormone is a pituitary which signal to your thyroid. The higher it is the lower your thyroid levels are likely to be, but it’s unreliable you need to know actual thyroid levels are. FT4 (Free thyroxine) & FT3 (free triiodothyronine) the active thyroid hormone.
Because the TSH in range drs ignore it. You’ll likely make quicker progress if you arrange a complete private test.
Private testing options:
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00 fast overnight, avoid biotin 3 days before test.
See link for private companies with discounts with many packages & options.
I really appreciate you taking the time to answer my questions. My GP is helpful to a point but seems to be guided quite rigidly by the reference ranges and I'm pretty sure it will be impossible to get all the other values tested as well. I don't need the stress so will go privately at the 2 month post surgery stage, which is fairly soon.
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