Hi! I wonder if I could get some advice to help me decide whether to get a cyst removed.
For the last 2 years I have been very symptomatic for underactive thyroid. All the classic extreme fatigue, hair falling in clumps, very dehydrated skin, high cholesterol, alot of new food intolerances, adult acne, dry mouth, you name it, I've had it.
I've had a couple of medicheck thyroid blood tests and quite a few on the NHS. They have been under range or just border line. I've tested a couple of times for antibodies and have had raised antibodies so believe it is hashimotos that I have although no GP on the NHS has acknowledged this yet only an immunologist that I paid to see privately confirmed that I do have hashimotos.
What first led me to think I may have a thyroid problem was a growing lump on my neck. I've had a couple of ultrasound scans, its benign, but growing fairly quickly. They said it is just a cyst on my thyroid. It's now causing me quite a bit of discomfort. It used to only cause discomfort when it seemed I was having a "flare up". And only 34 years old, it just looks awful. Everyone notices it now.
So, I am still fighting to get anyone on the NHS to acknowledge I have a problem with my thyroid, so I'm on no meds.
The immunologist put me on very high levels of D3/K2, b12, folate, all the B's omegas, oil of primrose, l-tyrosine, which I've taken religiously for over 6 months and it hasnt budged my thyroid function. In fact it's just kept dropping. TSH, T3 and T4.
I've taken myself of gluten for the last year, dairy I came off completely but I have it now and again. I think it just aggravates inflammation if I have too much.
I've worked hard on controlling inflammation for the autoimmune. Still a work in progress.
I have a feeling, based on previous health issues and virues I've dealt with, that maybe the problem is central thyroidism. Seems as though TSH isnt communicating properly. It should be raised when my T3 and T4 are borderline and dip under range.
So this is a bit of background.
Here on the NHS nobody communicates it seems. Nobody unifies symptoms. So I was sent to ENT for the lump. They said they can cut the cyst out no problem but will take half my thyroid and he doesnt know if the cyst will start growing on the other side in the future if it's not already because it's already coming around the front of my neck.
I asked how this would affect my thyroid function because I already find it quite debilitating. I suffer with migraines that last between a day to 3. The tiredness has meant I can no longer work etc etc.
His response was a shrug of the shoulders and that it "isnt his department". He was Frank and said that he just cuts. I would have one followup but he wouldnt have a clue about thyroid.
So he has referred me to an endocrinologist before I make my decision, but not always it seems does the endocrinologist get it right. I'm so scared of getting half my thyroid removed and making myself worse!
If i were able to get medication does anyone know if this possibly could reverse the growing cyst? Or if it is central thyroidism together with hashimotos would it make no difference removing half my thyroid?
Also, before I see the endo I have a blood form to test for CORT, FL, TSH, RE2, LFT, FBC2, T4, IGF1, PROLA, UEs. Should I come off my B supplements before or none of those would be affected?
Thankyou so much if anyone can shed any light
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kaju20
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Thankyou I did recently get my TPO and TG tested with medichecks. They were both under their range. As I know it's a job getting the NHS to add any extras to their blood tests. Silly they're not testing for T3 but I've tried in the past to get that added and they dont see the point. Tut.
Thanks for that, I will make sure I'm off biotin. Blood test is booked for 8:55 so I'll be sure to not eat or drink. Thankyou
Only the vitamins that are included on the advanced thyroid panel. I'll attach the screen shots, the range is just above my readings. Iron I struggle to get up but as I understand it's not easy while the thyroid is not functioning. I've spent so much money on supplements and focused on my diet to get all these up
The D surprises me as I'm on a very pricey quicksilver scientific nanoemulsified d3k2 pump. I take2 pumps a day instead of the recommended 1, as advised by the immunologist
Yes, I've had 2 ultrasounds now. They said its benign, looked all dark which they said shows nothing sinister. Its grown to 3.5cm on the last scan in april but I wouldnt be surprised if its another 1cm bigger at least. I'm seeing ENT again next week, I plan to ask for another scan to monitor how quickly its growing.
I don’t understand why these doctors do US and call it benign “seriously” flawed process … I had lots of US on my “benign” thyroid cyst over the years until I started really having issues and finally they did a FNB and it came back positive for thyroid cancer. Im not saying this to make you panic or worry it just boggles my mind that they don’t FNB the lump especially since it’s growing .
They have included a lot of blood test on the request. I’m familiar with most but couldn’t tell you what RE2 might be.
It’s very unfortunate FT3, ferritin, B12, vitamin D aren’t being tested.
As you have previously had antibodies tested and showing above range this should be accepted as evidence of autoimmune being present, they wax & wane greatly so subsequent results doesn’t prove it’s now gone.
Will the doctor not accept the prior result?
It’s very difficult when ENT only deals with the surgical aspect and endocrinology only assesses the hormonal status but this is a common experience. As ludicrous as is it specialists stick to their own domain.
Many report that once adequately medicated, their thyroid swelling, throat issues are resolved, so there is the potential that adequate treatment of underlying hashi hypothyroid may will reduce cyst & swelling. How probable that will realistically be, and how well even the most expert can manage your levels is impossible to predict.
I think it would be right to see what endocrinology suggest, you may be offered treatment which does settle the issue, but if the cyst is growing and becomes a physical issue removing it will be necessary, even if thyroid function was completely healthy.
When levels fluctuate as they tend to hashis it’s not unusual to see in range TSH. The TSH takes time to respond and when levels are moving it tends to become even more sluggish. So over time you would see the TSH rise. its when the thyroid levels are consistently low and the TSH remains low, central hypothyroidism is a possible diagnosis.
All low thyroid levels are treated the same, replacement until FT4 & FT3 in range, that’s wether it’s by autoimmune, central or by surgical intervention.
Thankyou, that's very helpful information. I think in the past the IGF1 was tested for evidence of a pituitary cyst. I'm sure it was elevated but they dismissed it. The TSH and T3 and T4 have been consistently low on every blood test. My plan is to present on a clear bar chart with dates and levels to show the decline. Ask about the possibility of central thyroidism and go from there.
I have also heard that with the adequate medication cysts can go down. That would be amazing but I'm not holding my breath with that one. It's just getting very tiring trying to prove I have a thyroid problem. Even with physical evidence. Numerous consistent blood test results... one GP told me they couldnt easily give me thyroid medication because of the "politics" involved.
Thanks for all that. What you said sums up everything I supposed. Dont think theres a clear answer, just going down the rabbit hole and seeing where it leads me
have had raised antibodies so believe it is hashimotos that I have although no GP on the NHS has acknowledged this yet
This is "normal" behaviour for UK doctors. They don't use the name Hashimoto's Thyroiditis, they refer to "autoimmune thyroid disease" or "autoimmune thyroiditis".
But often they won't mention the cause of thyroid disease at all because they don't think it matters. For people with an underactive thyroid the treatment from the NHS is Levo. That's all they care about.
Good to know. I wonder if that will be the case with the endocrinologist I should be seeing in the next few months. I've had a referral. Just waiting for the appointment. I'm so tired physically and mentally of fighting to get help. The reason I have been referred to the endocrinologist was because my GP couldnt convince I had no problem with my thyroid so she said shed send me there so that they could explain I have no problem. I feel like a crazy person
In the situation where you have to fight the medical profession every step of the way, I would definitely recommend trying to improve and optimise the many nutrients that get mentioned on this forum. It will help people to feel a bit better while they wait for their thyroid to deteriorate enough for the medical profession to treat.
Always research before supplementing so that you know the symptoms of deficiency and toxicity of anything you take, and you need to know how the body gets rid of excess amounts (if it can).
I have been religiously working on optimising the key nutrients, cutting out gluten, dairy etc... its carried on growing. If there was some way of knowing what causes cysts or the growth I would completely do things the natural way. That's what I've been working on for the last 2 years while I couldnt get help on the NHS. But my thyroid function has only dropped. From what I've researched I'm convinced it's a problem with the pituitary. The message isnt getting through to the thyroid. TSH T3 and T4 are all very low dipping in and out of range
Thankyou, I'll try look up about this specific surgeon. It surprises me how quick and willing they are to remove it. I felt like he wanted to book me in there and then. I'm so nervous as to what to do, so many what ifs...
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