Hello I am new to this site so looking for any guidance possible before seeing a specialist regards a growth (2cm x 1cm) that was found on my thyroid and ongoing symptoms I have been experiencing for a few months.
I have been feeling since last September;
Fatigued which is getting worse
Brain fog and forgetful
Pain in hips and lower back
Pins and needles in hands and weak hands and legs especially in waking
Cramps in calves
Teary and upset for no reasons
Short temper
Pulsing in my throat
Passed out once felt airways closed while swallowing for a second and woke up on floor
Also feel quite on edge for no reason
Urinating so much
Upset tummy’s and going more frequently
However bloods are showing within normal range.
Tsh 0.65 and t4 12.9
I am going to see someone private to try and find out more about the growth and why I could have symptoms without the bloods showing problems so any help or experience in something similar before I see someone as it’s bamboozled me and I want to ask as many questions so I don’t waste my an expensive apt.
Thanks
Lisa
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lisajerry7875
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If you can please add the reference ranges for your test results this will enable us to interpret them properly. FT4 in particular we need to know where in the range your result lies.
Also, it is advised to get full testing before seeing your specialist as it will be cheaper and you will have all the information before you go. Best to test
TSH
FT4
FT3
Thyroid antibodies
and including key nutrients as well is helpful because if the antibodies show autoimmune thyroid disease (Hashi's) then that can cause low nutrient levels or deficiencies.
Check out Medichecks Advanced Thyroid Function test or Blue Horizon Thyroid Premium Gold, both can be done by fingerprick or venous blood draw which will cost extra. Details and discount codes here:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Thank for you replying I just replied to hedgeree too that my Neuro consultant requested bloods for me privately and is passing me to a specialist for thyroid but none of the admin or secretaries can pass me the results and I don’t have my new apt or a follow up anytime soon with neuro. For the results I said above I have asked me gp for more info so had to fill out a data protection form and they said it can take up to a month to get me the full results for review. I know my tsh went from 0.82 in October to 0.65 in March when I asked gp to check them agajn as I was feeling worse but I don’t have the ref ranges yet or the t3 result just was told they were all in range.I had low iron stores ferretin at 7 in the Oct but it had increased in March to 17. Again only part of a pic so I need more info and maybe some more tests I’m not sure. I didn’t know I would have this issue getting the results from the private tests.
No follow up bloods from gp. They suggested I identify with long covid. Initially iron last year could have been after having a baby but now on pill on supplements and eat meat and pulses.
I did have a strange thing happen with my mouth a Malteser size lump appeared suddenly mid way through a morning about a month ago. Next day it was a thin grey flap of skin that then disappeared in about a week and I have really sensitive teeth. Spoke to dentist but the lump was gone within a week so she didn’t see it I took pics of the skin flap it was something she thought might be related to a siliva gland stone. I also had random rashes on both my ankles at same time in March but the doctor said she wasn’t sure what it was and that both rashes although there at same time were different
none of the admin or secretaries can pass me the results and I don’t have my new apt or a follow up anytime soon with neuro.
This is because they have to get permission from the doctor to pass on the results, it happens in GP surgeries too. I would ring back and ask them to speak with the doctor to arrange for you to have a copy of your results as soon as possible, it is your legal right.
For the results I said above I have asked me gp for more info so had to fill out a data protection form and they said it can take up to a month to get me the full results for review.
If these are tests done at the GP surgery then they are just being awkward. Just by asking for your results you are making a formal request. They are referring to a Subject Access Request which is necessary if you want the whole of your medical records. Just for a copy of your recent test results they can, after getting permission from the GP, print them out immediately and pass them on to you. I have been having my results for donkeys years, I ask, the receptionist speaks to the doctor within minutes, my results are printed out for me to collect almost immediately.
I had low iron stores ferretin at 7 in the Oct but it had increased in March to 17.
Have you been tested for iron deficency and had a confirmed diagnosis and on prescribed iron? Ferritin below 30 confirms iron deficiency according to NICE:
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
So an iron panel to include serum iron, total iron binding capacity, transferrin saturation percentage plus ferritin should be carried out to confirm iron deficiency, and a full blood count to see if you have anaemia. You can have iron deficiency with or without anaemia.
Are you being referred by your gp to an NHS endocrinologist? I'm assuming you must have already had an ultrasound scan with you being able to describe your nodule's size? If not you could also ask for a referral for a scan and to an NHS endo.
As SeasideSusie advises get full testing done before you book any private appointments.
There are other members of the forum that have nodules and can give you advice; I've just had a biopsy of my nodule and getting the results soon.
Thank you for the reply. I had an mri scan for the symptoms I have been having to rule out any autoimmune conditions and it has picked up the nodule. As it was a neuro surgeon I saw he is passing me onto a specialist that can help with thyroid. I got the bloods I needed recommended by him done at the private hospital i attended however no one can give me the results on the phone unfortunately and the apt to see the next specialist has not come in to be able to see him and ask the results.
Yes common I would like to get to the bottom of if it could be causing any of my symptoms and if not I can forget about it. Been so unwell for so long now I just want to start to feel on right track
Nodules don't usually cause symptoms, unless they are what are called 'hot nodules'. That is to say they are producing thyroid hormone on their own, causing you to be hyper. Your labs in no way suggest hyperthyroidism, so I very much doubt your nodule has anything to do with your symptoms.
Your symptoms could be due to hyperthyroidism, but impossible to say without full testing and ranges. The two numbers you have given us are meaningless without the ranges and the other numbers. All the results have to be considered in conjunction with each other. Which is why so many doctors fail to diagnose and treat correctly.
But, your symptoms could also be due to nutritional deficiencies - B12 and magnesium especially come to mind. So, at this point, it's difficult to give any helpful advice, except to get thorough testing.
Low ferritin when it was at 7 it was 6 months after giving birth which is when my symptoms started to really bother me. So I have been taking iron 3 times a day 200mg I think can check later. When it was up to 17 the gp results person phoned and said gp note said to ensure i had an iron rich diet. i wasnt happyas i do have all
meats pulses and veg so called back and asked for more supplements.
for period after the heavy one 6 months after having my baby i went back on the pill back to bsck and now when on a break very normal bleed.
i had gluten issues 4 years ago had the colon investigations as had bowel issues but celiac
was ruled out and gluten intolerance diagnosed.
The last gp i spoke to on the phone suggested i go read about long covid and see if i identified with it as i had so much going on and normal bloods there was not much more they could do. i was in tears on phone as i am not functioning like i used to.
Hello thanks for that it’s always useful to know if things that could be causing this. I didn’t have a traumatic blood loss this time it was delivery by section and felt great after but my first daughter 7 years prior to that I did have major blood loss however I recovered quick enough in post op to avoid a blood transfusion
I have a nodule 5cm & because its considered large in size the team did a fine needle aspiration (FNA) at the first appointment.
Usually nodules over 1 cm are considered for FNA, but doctors look at the size & health of thyroid and features of the nodules. Such as wether its fluid or solid, the vascularity and make a judgement as to if it should be biopsies.
The function can’t be conclusively determined by ultrasound so different specialists will look at physical issue from the thyroid, ear nose & throat specialist (ENT) and endocrinology will deal with function & blood test results.
I also had a salivary gland swelling. No sign of stone but submandibular gland other side of nodule became inflamed. It was scanned 2x but reason never explained. I think it had something to do with thyroid levels or the antithyroid medication I take. My nodule is hyper functioning, and it was missed when I had a FNA. Staff saw that the biopsy was clear but didn’t notice function hadn’t been processed.
I take low dose of carbimazole - an anti thyroid. Doctors don’t recommend long term use but I find it the best option.
Hyper nodules know as hot or toxic are unusual, most are cold or warm - non or normally functioning. Nodules are common, more so with autoimmune.
Once you have range for FT4 & results for FT3 & antibodies you will know more.
Symptoms can be very varied, & some conditions can cause fluctuations too.
I gained weight - hypers usually lose weight.
Your symptoms re upset tummy are more associated with hyper, (hypo tend to have constipation) anxiety, brain fog & fatigue very common with either hypo & hyper.
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