My thyroid blood results were up and down since I became very unwell 2.5 year ago. Levothyroxine, (on a stable dose, for years, previously), became frequently altered.
I was diagnosed sjogrens syndrome a year ago. Still, I felt my thyroid symptoms were making me feel worse.
My consultant for Sjogrens kindly tested bloods and referred me for an ultrasound of neck.
Tsh O.O1 (O.27-4.20).
Thyroglobulin 28 H.
Thyroid shrivelled mass (sonographer observation) .
I began taking adrenavive 11, one a day, (6 weeks ago), for adrenal fatigue.
Dr P advised lower Levothyroxine dose from 75 to 50mcg a day, same time.
I then received a letter from Dr P, suggesting, start adrenavive 11, 2 capsules a day and begin metavive 11, whilst stopping levothyroxine.
I didn't get a chance to start the new regime as I became very unwell.
One week ago, I suffered utter fatigue, abdominal discomfort, so awful.
4 days ago, I was literally wiped out! Abdominal pain so awful, I did not take adrenavive 11, that day (nor last few days). As it happened, I attended for a blood test same day my abdomen pain started.
By evening time, 4 days ago, my temperature increased, symptoms worsened. I attended out of hours doctor service. I was diagnosed UTI and prescribed a very strong antibiotic.
Today, I received a letter asking me to contact GP to discuss blood test.
Now, I am feeling so despondent. In fact, I have crime, because I do not know where to turn, who to believe, and worry, that I will lose trusting my gut instinct.
GP merely told me my tsh is now 4.57 (0.27-4.20). Bingo, I thought, that's why I am suffering horrible symptoms. Apparently not!!
GP told me, no action needed, because I am within range, or just out of range... oh, here we go...
I said, actually, thyroid UK.... believe tsh 1 or below, better??? My GP, very dismissive, we can keep chop n change dose, but will never get it exact, but you are within range...
Interestingly, she did not discuss FT3/4 results, I didn't pursue, as I felt, I WAS BEING TOLD! It would have been futile, and like begging for understanding.
I did ask, is it about time I saw an endocrinologist? Absolutely no discussion, GP glossed right over question, telling me I should not have symptoms as my results are within range.
My weight has ballooned. I am low in mood. Constipated.....on n on... the symptoms are getting worse...
To add insult, to injury, my GP told me, with a tsh of 4.57 I should not have untoward symptoms, as I am within range...
My own belief is, the swing from tsh 0.01 to tsh 4.57 in a matter of a few short weeks, is bound to have an impact on my symptoms.
But, I am left feeling what I think, what I experience, is not what is important, in diagnosing and or treating...
Now, I am unsure, should I begin adrenavive 11, metavive 11, as suggested by Dr P, (I would phone his office tomorrow but expect only receptionist would be available), stay on levothyroxine as GP says, and just shut up, and put up?
I would be so grateful for any advice, I value real life experience.
Thank you for reading.
Written by
webar4780
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webar4780 But you're not within range are you, you know that
TSH: 4.57 (0.27-4.20)
Your GP doesn't understand Hypothyroidism if she says that is in range, in fact challenge her maths!!!
Results from Sjogren's consultant - Tsh O.O1 (O.27-4.20).
Blood drawn at different times of the day can cause differences in TSH level, but not to this extent. What are your TPO and TG antibodies levels? Are they over range - Hashimoto's? That will cause big fluctuations.
"Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
Dr Toft is past president of the British Thyroid Association and leading endocrinologist. Email louise.roberts@thyroiduk.org for a copy, print it and highlight question 6 to show your GP. Take an assertive person with you, partner, family member, friend, who can speak up for you when you can't.
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Are your vitamins and minerals at optimal levels
Vit D - 100-150nmol/L according to the Vit D Council
B12 - top of range
Folate - at least half way through it's range
Ferritin - half way through range, absolute minimum 70 for thyroid hormone to work
Have you had a full blood count, iron panel, haemoglobin test?
I have had some much needed sleep. I will take a look at results I have and post them. Not sure I have all ranges.
I believe the surgery are seeing me as trouble because I question GP. They are reluctant to give me copies of blood tests, won't give if hospital asked for them, won't let me see a new GP who was blatantly rude when I questioned tsh previously. (She got very nasty with me).
My GP said she will test my urine this morning, tell me if I need continue antibiotics. I am not looking forward to explaining to receptionists that she wants them to pull her out of clinic to do this!
I have to go to my daughter's today and babysit. I know I will be making many changes, I have before, school holidays and supporting family has drained me. I will change my natural inclination to help everyone.
You are right, I should take someone assertive with me to GP. Alas, there is no one. I have begged family to come with me sometimes, I say, who cares, they always reply, no one cares.
Trust me, I am very low in mood because I am in pain, feel very unwell but I am opening my eyes, ears and heart to recognising what and who is bringing me down.
Whatever happens, I will be changing my GP practice tomorrow. Though, I suspect, they are all in the know, have each others backs, etc. I've seen it all before. We have two local practice. I see the staff from each, rubbing shoulders, at training days, local teaching hospital (I used to work there).
I won't forget my GP phoning HR when I was off sick, they insisted I went to work, GP said I wasn't fit (Id had an accident), she phoned HR manager in front of me, telling me, HR woman is my friend....
I'm afraid, despite Mrs May, trying to alter the status quo, it is still, very much, THEM and US.
Sorry, don't mean offence, I just feel so very unwell, so alone, yet again.
I visited GP this morning, in response to her asking me to bring n a urine sample, (that she would test upon my arrival), so that she could advise if i need to restart taking antibiotics, (given by out of hours doc last Friday).
I did as SeasideSusie suggested; I asked my husband to accompany me, as my assertive chaperone. I duly informed receptionist, handed over sample, and requested copy of blood results.
My 'assertive' chaperone, visited the receptionist 3 times, (he had to go into work), each time, told GP still with one patient, same patient. (During this time, I was suffering a lot of abdominal discomfort). He was repeatedly told, urine not tested yet, someone will get blood results.
After 40-45 minutes, I asked my husband to tell ask the receptionist to phone us with an answer regarding prescription medication, and that he would collect blood results tomorrow because he had to work, and I was in pain, needing to leave the surgery and take pain relief meds. He was then told receptionist had to speak with GP before printing bloods.
I was waiting outside, all the better for standing position! My husband joined me after some time, no instructions, no blood results. I just could not go back into surgery. I was getting very tearful. I asked him to take me to my daughter's home. My husband had not been able to get past the gatekeepers. They told him I was not on the system for an appointment. So, I guess they decided to keep me waiting.
My lovely daughter has been my advocate today. She is a corporate trained manager. She bypassed the frontline receptionist, spoke to the team leader, telling her there was a communication problem. Then told of her concern should Mom take medication, I am relieved to say, team leader phoned back, restart medication. My daughter had also told them to have blood results, ready to collect, for tomorrow after midday. We have now been assured they are ready for collection.
What really concerns me is, when we are the patient, feeling really unwell, we must find an assertive person to advocate. How many people are not so fortunate to have that someone?
Tomorrow, without doubt, I am changing my GP practice. I am, normally, that assertive person! I only need a doctor when I am too unwell to manage for myself! The service? Is a disgrace.
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