To give context, I've had many thyroid function blood tests now, and they all say they've been within "normal range" even though my TSH was (last year) 7.2, TPO >1300 and T4 13.
Edit: I have since been diagnosed with Underactive Thyroid but have not been granted medication.
Roughly a year ago, my thyroid had swelled which I now know as a goiter. I had an ultrasound on this, to which the doctor found a lump next to my thyroid. 3 biopsies and an MRI later, it was still undiagnostic but they're adamant it is just a Reactive Lymph Node to the swelling of my thyroid.
As of the past 4 months, I have now noticed a new lump on the right side of my neck that I can feel to the touch when I bend my neck the opposing way. I had a blood test this morning to test my Thyroid function again, and the results are now:
TSH 3.7
T4 11
WBC 6
(I did ask if I was being tested for TPO and she said no which I found slightly strange) I don't have a hard copy due to the current climate in which we're all in.
1) Is it normal for your thyroid function to fluctuate that much?
2) Do you think I should push to get the new lump biopsied?
I am also having symptoms which are related to my thyroid (as explained by the surgeon), but my GP is still treating my case as normal due to what the blood test has presented.
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With this level of antibodies you will get varying secretion from your thyroid until it packs in. It would be really useful to measure your fT3 also. I don't know why they are messing about with expensive procedures like biopsies and MRI when an fT3 assay is a pound or two and levothyroxine is dirt cheap. It makes sense to check you TSH, fT3, fT4 and if you are experiencing hypothyroid symptoms to give you levothyroxine. The levo may well help reduce you goitre.
It would also be useful to check your selenium levels and to supplement selenium as it can sometimes help reduce autoimmunity.
Your doctors are messing about with intricate procedures when a simple cheap prescription would be much more effective.
Hiya jimh111, for some reason when I called earlier to get the results over the phone she didn't mention fT3 whatsoever. I can only assume they did the 3 biopsies & MRI because they needed to find the direct cause of the lump instead of mistakingly assuming it was anything to do with my thyroid (which in turn later turned out to be because of it).
I've asked to speak to the Dr in the morning as a) I still need the new lump investigated and b) need some clarity as to why they aren't starting me on levo.
They tend not to do an fT3 even though the assay costs a pound or two - 'guidelines'. Unless they think the lump is anything other than Hashimoto's thyroiditis it would make sense to give you levothyroxine to see if you get better and the lump gets smaller. A thyroid being hit with this level of antibodies will swell up or have lumps.
Ask GP to test vitamin D, folate, ferritin and B12
These are all frequently EXTREMELY Low when you have been left without starting on levothyroxine
Your results from a year ago show you are hypothyroid, with Hashimoto’s and EXTREMELY low ferritin
Did you get full iron panel test for anaemia?
Were you prescribed iron supplements?
Low vitamins tend to lower TSH....so important to regularly retest vitamin levels
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
At the time I did get tested and was told I was iron deficient to which I took the prescribed Iron tablets. I got tested again (not sure the time scale in between) and my iron levels were borderline ok. I was since told to stop taking the tablets and there has been no mention of it since, although I do need to get tested for it after complications with the contraceptive pill a good few months ago, however I cannot currently request a blood test outside of doctor referral due to my GP surgery's requirements around Coronavirus.
I typically skip breakfast and have a protein 'meal replacement' shake or simply a glass of water, therefore this morning was done in a 'fasted' state.
I was previously tested for coeliac disease (tested negative) when they were investigating my now diagnosed IBS.
Is it typically normal for levels to sway that much? I have noticed a small fluctuation before, but never this wide, and lastly, if I have presented reactive lymph nodes and enlarged thyroid for the past year, why haven't they opted for any type of treatment?
As jimh111 has pointed out, you've been sent off on an off-piste, time wasting and costly route through the system, when your blood results indicate Hashimoto's and the standard practice is to commence thyroid hormone replacement also keeping a close eye on vitamin and mineral levels.
An IBS 'diagnosis' is not a diagnosis in my opinion, because it doesn't point at a cause. Candida overgrowth and fermentation in the gut is one cause (which correlates with autoimmune disease). Candida can wreak havoc with Ferritin levels. Lots of advice from good doctors online (Dr Myhill's website is particularly good).
In answer to your original question, yes, fluctuations are very common indeed when you are not being treated.
I have a multi-nodular goite and it does affect my thyroid function. The NHS won't treat you until your TSH is about 10 I'm afraid. I once had a TSH of 9 and was offered counselling by my Endocrinologist so I walked out of his clinic. I think your thyroid is struggling because normally your TSH would be about 1. Your T4 looks low so I think your T3 will be as well. I think you need Levothyroxine but I doubt you will get it. I am sorry if I sound negative but I have sat infront of my GP with a low T4 and T3 with my hair and nails dropping off and begged him for treatment he refused to give me Levothyroxine even though he knows I have a goitre. Most Doctors follow NHS guideline and are reluctant to go against them because they might be stuck off. This is what my GP told me so I now do my own private blood tests and self treat.
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