Firstly apologies for the length of the post and I hope I’m posting in the right place. I’m just feeling quite confused and exhausted with this whole situation and wondered if anyone has any insight.
I’ve been feeling unwell since Nov 2019 and been back at the GP numerous times. Symptoms started as bloating, fatigue and poor circulation. Progressed to tingling and pins and needles mainly feet and sometimes hands. Bloods always classed as normal. Paid privately for pelvic and transvaginal ultrasound which ruled out gynae issues. Stool sample clear. Advised likely stress/anxiety. Attempted to manage symptoms via dietary changes and supplements with no real improvement. GP still wasn’t interested and said likely nothing sinister. Symptoms continued to progress and in May this year I had night time visual disturbances resulting in blurred vision in one eye. Pressure type headaches and neck pain. Saw nurse who called ambulance during my appointment as I had tachycardia (HR 180 resting). ECGs clear and they weren’t concerned about vision issues. Referred back to GP who put HR issue down to anxiety and referred me to neurology. Still awaiting an appointment but advised 5 month minimum wait. I assumed the GP was thinking of things like MS.
Then in June I noticed a lump on left side of neck. Ultrasound last week identified two ‘lumps’ on thyroid which aren’t suspicious and I was assured ‘no sign of any cancer’. I’ve been referred to an endocrinologist but not being seen until mid Sept.
I’m now starting to wonder if some of not all of my symptoms could be thyroid related? More recently I have sores in mouth, nasty taste, reflux/indigestion and pruney fingers and dry skin. Puffy eyes. My tingling continues though not as bad as it has been. Still fatigued and feeling the cold. General muscle aches and pains and sore joints. What’s confusing me is that these symptoms seem to relate to an under active thyroid but I haven’t gained any weight. Also the higher HR would seem to indicate overactive thyroid? I have invested in a Fitbit and found my HR was mid 70s-80 resting and 90-100 fir any level of activity. I haven’t worn it for a couple of weeks and pit back on today. It does seem to have come down roughly 10 BPM.
My TSH level has been tested twice and showed normal at 0.76.
I’m feeling pretty hopeless after feeling unwell so long. My fear is that the issues I’m having will be dismissed as not thyroid related. Everything I read online from people with thyroid problems seems to suggest the blood ranges the NHS use mean those who should be medicated aren’t always and even those who are often find they don’t feel any better.
I know I should be very grateful my ‘lumps’ are showing benign and I am so thankful for this. I just wish I could feel more hopeful of a light at the end of the tunnel to ever feeling well again.
If you made it this far, thank you for reading!!
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Bambini83
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Autoimmune thyroid disease (hypothyroidism) also called Hashimoto’s, frequently starts with transient hyperthyroid results and symptoms....but the underlying trend is to become increasingly hypothyroid after each attack
Gut symptoms of bloating, acid reflux etc are common hypothyroid symptoms
High heart rate can be hypo or hyper
Many Hashimoto’s patients start with weight loss. A few really struggle to keep weight on
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
Ask GP to test FULL Thyroid including thyroid antibodies and vitamin levels
Also an ultrasound scan of thyroid can be helpful
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Bambini83, I’m sorry to hear you’ve felt so unwell and confused. An out of whack thyroid can cause such a huge array of symptoms. Everyone is going to ask you if you’ve had various other thyroid tests done as just TSH tells us squat. It sounds like your thyroid is under active but we need FT3 and FT4 tests at the very least. Private testing might be a way forward.
Please don’t feel disheartened, yes, there are lots of people who struggle to get optimally treated. But keep focused and keep going, and you will get there, be it with a few bumps in the road.
As well as a potential thyroid issue, the numbness and pins and needles could be either B12 or folate deficiency (or both). Has your doctor tested your B12/folate levels?
Poor you, it sounds like it’s been a nightmare. Unfortunately yours is a very common story around here. Slow Dragon’s advice is spot on.
Such symptoms of course don’t always end up being thyroid-related but alas, doctors are so ill-informed on the topic they miss both under and overactive thyroid issues on an alarmingly frequent basis.
These signs and symptoms are consistent with hypothyroidism. Visual disturbances, what my specialist used to call 'floaters' can also occur. You need to have TSH, fT3 and fT4 checked, all three. You GP will probably struggle to get fT3 done even though it costs the NHS just a pound or two. I would order a private finger prick test, they are about £30 and as you can do it at home there are no COVID-19 issues.
Although you TSH is fine it may be that your fT3 and fT4 are too low and your TSH is responding inadequately.
Socks and gloves - a reference to B12 Deficiency affecting hands and feet ... Your B12 is good around 500 - 70 if it's the private Active Test. Folate and Ferritin are good around mid-range and VitD at 100 plus.
The above nutrients are often low with Hashimotos due to poor uptake. First step is to request your results with ranges from Reception so you can monitor your own progress and check what has been missed ! They are legally yours !
What’s confusing me is that these symptoms seem to relate to an under active thyroid but I haven’t gained any weight. Also the higher HR would seem to indicate overactive thyroid?
Yes, that confuses a lot of people - including doctors! But not all hypos gain weight. Some of them actually lose weight. But, there are over 300 symptoms of under-active thyroid, and you don't have to have all of them to qualify. Everyone has their own individual sub-set of symptoms. Symptoms are caused by low levels of the thyroid hormone T3. T3 is the active hormone, needed by every single one of the millions of cells in your body. And, when there's not enough to go round, the body makes a decision on which cells should be priority - like the brain, the heart, etc. But, that decision will be different for everyone, and you get symptoms in the areas where the cells aren't getting enough T3 - or even none at all.
And, another thing that one has to accept is that a lot of symptoms can be caused either by too little T3 or too much T3. High HR, for example, can be a symptom of too much or too little, as can weight-gain/weight-loss, high blood pressure, anxiety, and a lot of other symptoms. We cannot divide symptoms rigidly into hypo and hyper, because so many of them can be either.
Also, a lot of the symptoms you describe could be due to nutritional deficiencies. The first thing I thought when I started reading your post was: low B12. Hypos often have low nutrients because they tend to have low stomach acid, meaning they have difficulty digesting their food and absorbing nutrients. So, essential to get vit D, vit B12, folate and ferritin tested.
Everything I read online from people with thyroid problems seems to suggest the blood ranges the NHS use mean those who should be medicated aren’t always and even those who are often find they don’t feel any better.
This isn't just a problem with the NHS. It's a universal problem. It's due to lack of education of medical personel. Doctors are taught very, very little about thyroid in med school, and they don't really understand how to interpret blood test results. Ranges are generally too wide, yes. But, even when the are narrower, the same problems still exist. Also, they learn nothing about nutrition, and nutrition greatly affects all things thyroid. I won't go into details, but this is all down to politics and money. And, this is why we thyroid patients have to learn as much as we can about our own disease, so that we can avoid being fobbed off by ignorant doctors, and get the treatment we need. It is possible to feel better.
Just to add a couple of points about B12 and folate. Please don't supplement with these before any nutrient testing, whether NHS or private, because that will skew the results without making you feel any better. Also, never supplement folate without knowing whether or not you are B12 deficient. The two nutrients work in tandem. It's a complicated area though, so I don't want to add too much extra information while you're still learning about the thyroid.
B12 lab reference ranges are ridiculously wide. Your GP may tell you your B12 level is fine, but your neurological symptoms could still be due to a deficiency of it. The NHS measures 'total' B12, which is not very helpful. An 'active B12' test is more widely available now, but alongside folate and active B12, you really need to measure a couple of biomarkers that indicate how well the body is absorbing and metabolising the B12: homocysteine and methylmalonic acid (MMA). Various private labs offer these tests, either separately or together. Viapath do the whole lot in one panel.
Wow thank you for all of the replies! It seems like I have lots of reading to do and lots to learn. It’s heartening that so many think thyroid could be part of the problem here.
My B12 was tested by GP last Nov though this was serum B12 not active. My level was just over 400. I have been supplementing with a B12 spray since January on the offchance it might help but I don’t know how much impact that would have. I did wonder if I should stop that now in the hope the endocrinologist will retest in September. My ferritin at this time was 36 so I also started Spatone iron liquid sachets. My folate and Vitamin D levels have never been tested. I take a vitamin D spray currently and also use a magnesium spray. I did try to do a private finger prick blood test about a month ago to test some of these things but I’ve really struggled to get the sample (tried twice). I guess I’ll wait to see what the endocrinology dept might test first then look at getting a private blood draw.
I’ll report back once I’ve had my initial consultation.
Thanks again for the replies - makes me feel like there may be some hope of feeling more human at some stage.
As you've been supplementing B12 via spray, it's probably best to organise a private test now, and let the lab know that you've been supplementing. In these circumstances, it may be best to do the full panel I mentioned above. I'd have to check, but the Viapath test panel may be available as either fingerprick or venous blood draw.
Knowing what I know now, living with neuro damage, I really would not wait for an endocrinologist to test B12 two months from now. B12 will be a side issue for them in any case.
Sorry your feeling bad and your story brings me back to my thyroid battle. First off the only way to know for sure if nodules are cancerous or not is to have a fine needle biopsy, not just ultrasound or blood test. Maybe you should see a private endo?
I live in France. The system is totally different. You don't need a referral, here. You just ring the endo of your choice and see if it's possible to make an appointment with them.
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