Hi I hoping to chat with anyone who knows their stuff about thyroid problems. I am 40 years old and since having my daughter 8 years ago I have had some odd symptoms ( it is only since grown goitre that It is all starting to make sense).
I have had an awful time for years suffering with a lot of symptoms (doctors put my on medication). Never once Thyroid was mentioned, I never even thought about under/over active.
So fast forward 7 years and I go to the doctor about a lump that has come from no where but explains why for years my breathing has been restricted when I lay down. She said she would get some tests, tests came back and it was normal. She wasn't even going to refer me to ENT it's only because I begged for urgent referral that she did (being seen next week). Now I am going crazy because my white blood count has come back slightly over (this was taken after a trip to a&e having a massive panic attack and couldn't breath) I did take a beta blocker and I was extremely stressed.
Before I knew about Thyroids my symptoms was mainly anxiety, feeling very nervous, sad, hair loss, nails brittle, weightgain etc... Now this year its been more noticeable, I have a large goitre that is really making it hard to breath, in the heatwave my hands/feet freezing, puffy face, feeling very anxious for no reason, carpal tunnel, hearing getting worse... all these are apparently anxiety related ( It is not I have had that and it is different ).
TSH was 1.84 two years ago and 1.89 last week. Not sure if it matters what time this was taken at midnight in hospital.
So sorry for long post, any help or information would be good. Thank you.
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mrsgilby56
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The TSH is thyroid stimulating hormone. Which isn’t a thyroid hormone it a pituitary hormone.
When thyroid hormones are “normal” the TSH is stable in normal range it acts a a signaller for the thyroid to increase or decrease production.
Your TSH results do look normal & stable as it fluctuates daily / seasonally.
As the TSH is in range the lab often do not test further. Only if abnormal do they automatically test actual thyroid levels, thyroxine & triiodothyronine - the Free (unbound) levels being call FT4 & FT3.
The TSH is usually a good indicator of thyroid function isn’t entirely reliable. If levels are fluctuating you can be having symptoms but the test doesn’t indicate it.
A Rise in white cells can be sign of infection but not necessarily a issue to be concerned about.
ENT would be look at the physical issues (with a surgical viewpoint) but would be leaving blood work to GP / Other specialist departments. If an issue is affecting your breathing then it need to be investigated. Ideally it should be scanned (ultrasound).
Doctors tend to put such issue down to aniexty - so be clear it’s a physical feeling - not when stressed. Worse when lying down demonstrates this. If you put you hands above you head does it feel the same?
I’d seen two doctors who both said my neck “look fine”. During the third appointment - with a nurse this time. I said look at my lower neck when I drink. I inclined head up, drank a gulp of water with a bottle I’d taken - my issue was visible.
Sometimes any nodules or swelling becomes quite evident when doing this, when not obvious at rest.
It might be worth doing a private blood test with a full thyroid function. To get a complete picture.
List of companies offering different options, some discount codes available.
You order test online the kits arrives via post & finger prick sample (extra fee for private venous draw). Post back and results are available quite quickly. There’s lots of options, some packages include thyroid function, key nutrients and thyroid Antibodies. Others basic function only.
Hi PurpleNails, Thank you for replying yes I am going to order some home kit tests. I do know someone who had an large goitre and she had no symptoms it just grew which is weird, luckily it was not cancerous. I am worried because I have had restricted breathing since 2017 so it has been growing since then. I've had HA and its back, so in my head I am already expecting the worse.
I guess I won't know what it is until I have the ultrasound next week. I did a full set of bloods at hospital I will have a look in my NHS app and see if they did. I did have a really bad chest infection and virus in early August (maybe covid/negative test) but it seems to have grown since then. HA is Health Anxiety (sorry). I have just started taking 40mg of propranolo because I was starting to get panic attacks after I noticed the lump. Thank you so much for replying.
Hi Purple I forgot to say my lump is like a round ball exactly where my thyroid is, but does move when I drink or push it. Its feels a bit squiggy not rock hard?. It prob doesn't help that I keep prodding it...
As you have anxiety doctors often put everything down to this.
I was given propranolol when hyperthyroid as it help very minimally lowers levels. (had a main medication to treat it) Have you taken propranolol before? When you wish to stop do so slowly. I was quite unwell with migraines when told to stop high dose abruptly. Reduce dose slowly.
Long term use gradually reduces magnesium levels. Consider a supplement citrate or glycinate are good forms.
Do you ever cough / choke on food? This can cause lung infection from food entering the lungs.
Only used it before for flying,he did put me on sertraline but I weaned myself off in the end. I never knew that, its only short term maybe until I get the scan out the way. I'm convinced myself its bad because it must have been growing for years.
Thank you Slow dragon, I will order a thyroid kit . I have noticed by looking online (I do not google only reading from peoples experiences) that most are left for years not diagnosed because NHS only uses one test. Then when a lump appears and we have to be scanned they know it would save the NHS more money by adding these tests on. My doctor said no to the extra tests which is unfair and silly. Now it is causing me and millions of others stress that can be avoided. Hopefully mine is benign.
propranolol slows uptake and conversion of thyroid hormones
It will make a small amount of thyroid hormones spread further by applying the brakes….it will also affect thyroid test results. (I was stuck on propranolol almost 20 years….more on my profile. )
You must never stop propranolol suddenly. Has to be reduced extremely slowly over several months
Essential to test vitamin D, folate, ferritin and B12, plus thyroid antibodies
What vitamin supplements are you currently taking ?
I deveoped a goitre at menopause. All my tests came back within range so nothing was done. I had annual needle biopsy and ultrasound scans. Then it grew so big that they couldnt guarantee the accuracy of these scans so I had it removed.
But like you the other symptoms were there . The BTO say symptoms are as imp as test results ..
Hi Thingybob, thank you for replying. Was your results for biopsy okay? I am scared that the lump has been growing for years and now its growing faster because it has something abnormal going on. I will say yes to surgery or I will pay private if i have to, to get it removed. Ive just ordered a full thyroid home kit hopefully it will come soon and I can get them done asap and sent off.
My biopsies were all ok. My goitre grew slowly at first, the consultant who I saw said not to do anything about it as long as it was stable and my test results were in range and I had no symptoms. So he discharged me . I was monitored through my gp. Then it got bigger and so the biopsies were less reliable. I saw the same consultant privately ....2 years after first seeing him... and he advised me to have the op to remove it ,even though I still had no symptoms and my test results were in norm range. This was because it was growing down behind my collar bone and he also felt my recovery would be easier at my age then (55) than if I left it . I went private and had the op. Ihad half my thyroid removed with the goitre as it was large. I have been taking levothyroxine since .
Thank you so much for sharing that, the more I chat the better I feel. I do feel bit more positive now. Even if it is bad il prob be having it taken out anyway. I reckon mine is huge too, I can't even lay down with out it restricting my breathing so its prob big. Crazy that your tests were still normal. Does the biopsy hurt? I hate needles? 🤪
I had the thyroid lump for over 18 years before it was removed. It was slow growing and not bothering me. Also, the ultrasound test showed a certain size but when they actually took it out and measured it, they found it was smaller so I am not sure if the ultrasound is completely accurate as far as size goes.
I had my goitre removed due to breathing & swallowing issues. I will say that I felt the issues daily but I had absolutely no clue how much I was suffering until it was removed. So I consider the surgery very successful.
I was content to just monitor and have needle biopsies every now and then - I had two of the biopsies and I felt like that procedure was no big deal at all. It was more the pre-thought. I had no interest in having a thyroidectomy.
The reason I changed my mind was twofold. The endocrinologist asked me to raise my arms above my head and lower my chin & talk. I could hardly breathe and whatever voice I could get out sounded like the devil. I was, What the heck? in that moment. And then just before that or after I almost drowned & I am a very strong and confident swimmer. I realized that that fun little moment was due to the goitre and I knew it was time.
Medication has not been smooth but regardless I consider the surgery a success, my surgeon did a great job. She is good with patients and skilled in her work.
And I had normal numbers yet out came a diseased thyroid. So ???? That was a surprise.
I hope you get some answers on what exactly is going on with you and have some clarity on how to move forward.
Hi Litatamon, thank you so much for your story. I am 99% sure I have Hashimoto's. I can not lift my arms doing a simple job like put my hair up. I tick every box for the symptoms. I am so glad that you had successful Thyroidectomy. Listening to stories like yours is so similar to me. How long did you notice the symptoms before you was diagnosed?. Thank you.
This really is not funny, but it is! The doctor did not tell me why she was doing it. So I thought nothing of it. And when the results were so immediate - and coming as a shock - I actually forgot that I was in control and could lift my chin up . Umm immediately.
All the best to you.
(And to show how valid the test is -I can do it now and talk & talk & talk no issue and of course breathe.)
I had a goitre removed over 10 years ago. It took years for a GP to confirm I had one and refer me so, you have passed the biggest battle. You now have to have confidence in the consultant or whoever you are seeing. You will still have options so come back for further information or reassurance. All sorts of things can affect the growth of a goitre or you might never know why. Go with the flow.
Hi Anna, Thank you so much for replying. What a nightmare for you to go through so long. I am on a mission now, even if I have to pay private I will. Was your TSH test coming out normal?
Hi ICE, it was my white blood it was just over 11 but I did have a massive panic attack before and had taken beta blocker -not sure if that makes a difference. The results said Satisfactory as all the others were okay. I have another full blood test next week. I am 99% sure I have Hashimoto's disease or something like that. Thank you for replying.
Before my diagnosis of hypothyroidism, my white blood cell count was 11.5. My absolute neutrophils were 9600. 1 week later, both dropped down, but were still flagged high. I have autoimmune vitiligo, so I assume I have Hashimoto's as well. Just prior to my high white cell count, I had a very stressful incident as well as covid. I assume the 2 white blood cells being high were either stress related or inflammatory related. I'm scheduled to get another blood test next month. I am requesting a full blood test just to see what my white cells are doing. Certain cancers cause that as well. The cancer part scares me. I did have rapid weight loss of 25 pounds within 2 months, but that has since stopped. I haven't lost any more weight since April of this year.
I have no idea but I did read on NHS website that stress and some medications can make blood count higher. I am having another one soon, I think if it was cancer maybe the raise would be triple that?. I am no doctor though so I do not know. I hope you manage to get yours sorted out too. I am also sure I read that Hashi can raise it- I will have another look on the website.
My doctor said with Leukemia, it would be 100,000+. Myeloma would be 15,000+. I read mixed info as to autoimmune diseases. Most saying the WBC would be lower. I have a hard time believing that, especially during inflammation periods.
Yes, I know some say that they have normal bloods with cancer but do they look at everything? My CRP was only 2 which is good (I hope). When I was rushed into hospital with a virus it was 700 😱
I had a large nodule in my thyroid (5cm) and the needle biopsy came back possible cancer. I had half the thyroid removed and now take levo (75 mg). I also had high white blood cell count that turned into CLL after the surgery. (not sure if the two are connected). I did research ablation which is sometimes used to shrink the nodule but was not able to get it.
If there is another way to shrink the nodule besides surgery, I would do it.
I think that I added this on another thread, and it certainly is not the gospel, just one surgeon thoughts.
I wanted ablation if the situation became too dire. I was told it was not an option here (Canada) due to cost. And my surgeon also told me she has had patients who travelled to another country to have it done, and it grew again. The first day I saw her she had just operated on someone who everything had not only grown back but larger. Obviously, this choice is not is a godsend for many people. But it does not always remain that way.
I am certainly not pro-thyroidectomy. I fought that option for a long time (but in my situation have been content with the choice). Just wanted to share that other options are not always smooth.
My numbers were fine pre-surgery but out came a diseased thyroid. My endocrinologist would not have shared any of that, just her way. My surgeon told me it was completely diseased right after and the pathology report backed it up.
When I had the report in hand and questioned my endocrinologist she made light of it. I always get a copy of my reports, it is crazy how two doctors can be so different with their findings. Or how some things are not even shared.
That is interesting. Was this report a documentation of the procedure of the surgery or was it the condition of the thyroid? I got a report but it just gave the size of the tumor and said it was benign. I will ask for a more thorough report though.
I got both but I was referring to the pathology report. It was verbally given to me but the verbal synopsis hardly matched. And didn't match the surgeon's initial words either. (But of course the verbal concentrated on the biopsy results, a given. )
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