I’ve recently started to go thorough some tests to see if I have something going on with my thyroid. I have an appointment on Saturday with an ENT specialist to look at the swelling in my neck.
My bloods have apparently come back normal other than my TSH levels which have come back border line high? I didn’t ask for the specific number because I panic on the phone but I was just wondering if someone could explain in simple terms what this could mean?
I also have Pernicious Anemia, could this be related at all?
Thank you.
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JodieLouise
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Sub clinical hypothyroidism is where your TSH, a pituitary hormone is above the top of the range but your ft3 and ft4 are still with in range. This strongly suggests that your thyroid is struggling and that in response your pituitary is producing more TSH to force your thyroid to work harder. Have you had thyroid peroxidase antibodies tested? The fact that you already have pernicious anaemia increases your risks of other autoimmune diseases and it is highly likely that you may have hashimoto’s disease, autoimmune hypothyroidism. You may already have some symptoms of hypothyroidism. Although you have been told your ft4 is in range, it may be low in range and sub optimal for you. It is really important to get copies of your blood results with the ranges for your personal records. It can be helpful to just scribble a note of how you felt with each blood result so you can get to work out the optimal levels, with least symptoms for you.
If you have symptoms and you are positive for tpo antibodies your gp may start levothyroxine before your ft4 drops below range or your TSH reaches the absurdly high level of 10. Once commencing medication the aim is to get TSH down to around 1 or until symptoms improve.
TSH, thyroid stimulating hormone is a pituitary hormone which signals the thyroid to produce new thyroid hormone. I think of it as a “feedback sensor” When a TSH it’s high it means your thyroid is struggling and your Free Thyroxine (FT4) & Free triiodothyronine (FT3) are low.
Doctors tend to go by this measurement, but it’s not sufficient you need a measurement of the FT3 & 4 to see how low your levels are. TSH doesn’t cause symptoms it’s the abnormal level of hormones which causes symptoms.
NHS policy is to wait until the TSH is well above range, by which time FT3 & 4 would be left to go very low, until replacement thyroxine is offered.
First step is to obtain your results to see what has and hasn’t been tested.
Arranging online access is ideal as you then able to view results without involving doctors and receptionists who can be evasive. This can take time to set up. You are legally entitled to your own record so in the mean time contact the surgery reception and obtain an actual print out of results, to share on here. Always include ranges they vary between labs.
For Full Thyroid function you need TSH, FT4, FT3, Thyroid Peroxidase (TPO) and Thyroglobulin (Tg or TGab).
Low nutrients often very common with thyroid disfunction, likely affecting your B12 & PA. folate, ferritin and vitamin D should also be checked. These need to be optimal for thyroid health and often overlooked.
Is your swelling the entire thyroid? Does it affect your voice, swallowing of breathing in any way?
Thank you so much for all of that information! I don’t remember the exact terms she used but she did say your thyroid levels are on the low side but you antibodies are borderline high.
I’m hoping after my appointment on Saturday I can arrange a phone call with my doctor for a more in depth conversation as I do feel very in the dark. I definitely know something is wrong because I have so many symptoms.
In regards to the swelling, I’m not really sure and I’m hoping the ENT consultant can help me with that on Saturday! I don’t have trouble breathing or swallowing but usually after I’ve eaten I feel like I need to clear my throat a lot, like it feels a little clogged sometimes if that makes sense? I can’t really explain it!
As it’s after eating your GP might think your throat clearing may be reflux type issue, hence ENT referral. If you have low thyroid it can cause low stomach acid which has the same symptoms as too much.
PA is autoimmune and having one autoimmune disease makes others more common
Autoimmune thyroid disease (hashimoto’s) and PA are common partners
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 vitamin D, folate and ferritin levels
Plus 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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I got diagnosed with PA in 2018 but I believe it had been going on for a very long time before that.
Okay thank you. I will definitely get copies of my bloods! The doctor did say they will probably re-test in a month or so so I will ask for everything else to be tested then as well!
I do feel like I’m banging my head against a brick wall with doctors nowadays!
Thank you for all of the very detailed information, I really appreciate it!
A border line NHS result for TSH is probably too high. Your TSH needs to be below 2.5 and better again at 1.00.- 2.5 or above is hypothyroidism. I was informed this by my private Endo.
It seems that our NHS set the ranges too wide for thyroid patients. Probably to reduce paying out for medication or treatment falsely. Why don’t they understand that thyroid patients will always be coming back as their symptoms will never improve and only get worse. If they’d just medicate when needed rather than leaving and leaving it, while patients keep suffering. I have little faith in our NHS for the thyroid.
That’s where I’d like to be living. But I best go on a holiday there first. How is treatment for the thyroid over in NZ? Can you get T3 easier than in the U.K.?
I have had TRAB and TPO done and confirmed Graves. I always get TSH, T4 and T3 tested. I don’t know if u get T3 easier here. I’m not in that position. Sorry I can’t help u more there. I do love living here. We live rural so it’s nice to not be around people. I’m really struggling on my road with this. I’ve had a very hard 5 years in and out of hospitals and each visit the dr took bits of us. I am in the process of seeing a psychologist and I have elements of PTSD. I have trauma for sure and it’s making my want to comply with the carbimazole too much for me. Just to add on last weekend my husband caused a quad bike accident where I went over him and landed head first in a paddock so this week I have concussion, neck and wrist sprain. For me the medical dramas just never stop. I’ve been diagnosed now 6 months and have been on and off the carbimazole. Some of the non compliance is side effects and some of it is trust is all gone and there is none left.
Sounds like you’re in a lovely area to live in. I had many years of struggle too. But since I’ve added T3 to T4 medication I feel so good it’s quite remarkable. Keep going and keep positive!!
We live in the South Island and it is beautiful. I am trying to be positive. Dealing with the trauma must come first if there is to be any drug compliance, I appreciate hearing peoples struggle not that I want people to have struggled but It makes me feel less alone and more normal. Kindest regards always NIKEGIRL
As McPammy says ....easiest way, going forward is to get online access to your medical records including blood test results
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
You can call your GP surgery snd ask them to print off your results for you. We are all allowed this service. You could pop in and pick them up ready for your appointment at the hospital tomorrow. Normally an ENT Dr wouldn’t be able to comment on thyroid blood test results. When you get the print out post the results on here with the ranges and then see what loads of informed people say. You can also apply for Patient Access through your GP receptionist. This way you can see all your results, consultations, documents and books appointments and repeat prescriptions. It’s so so much easier. But you must request all these options to view. You can then read them at your leisure at home whenever you want to.
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