Hi friends, I have included a link to my previous post and blood results. I am getting more and more unwell and have a swollen thyroid gland which is making it difficult to eat and swallow. My voice has become really gravelly and sore to talk.
As previous post, been diagnosed 3 years and never well or stable on levothyroxine. unwell for a while. Up and down dosage 25-75mg over years resulting in me becoming really unwell on treatment. I can just about manage 25mg. Tried various brands.
Over last 6 weeks my blood pressure dropping at night. Severe palpitations on levo. Lower right quadrant iliac pain. Nitrites high on urinalysis. U &E not bacterial so wondering if thyroid linked to kidney function/clearance? And if affecting blood pressure.
Cortisol in 400s st 10am on testing. I know it should have been earlier but couldnt get appt any earlier.
Was wondering if goitre issue is urgent. Ive never had a scan. If it is would i be on a waiting list forever?
Should I have kidney and liver function tests? Pain is constant but not severe in lower right hip area. No other strains or muscular problem im aware of.
Not due to see endo until late Oct. GP must think im mad as bloods always in range to them but sent me to A&E for ECG which was fine.
Dont know what to do. It tskes so much energy to explain symptoms to drs.
Endo put me on Vits B and D while we wait for final results of blue horizon full thyroid investigations.
Thanks for any sdvice you can offer.
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Mhaire
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Thank you humanbean. Pain isnt severe but more of a dull ache. No vomiting or other acute symptoms. Will get checked out and mention to dr next time i can muster energy to tackle it.
Hi slowdragon, I am on 25mcg. I am 82 kgs. Last year I was on 50 then raised to 75. I was just so ill on levo, gp tapered down. Then I came off altogether as dr said bloods fine and and i was subclinical hypo anyway. I felt pretty good for few months then the classic symptoms came back. Dr put me back on 25 told me not to increase until endo reviewed. Thts why I am still on 25. Got full investigations blue horizon which i posted last week. Link here:healthunlocked.com/thyroidu...hypothyroid-blood-results-advice.
Endo has put me on B6 50mg, thiamine1000mg, B12 1mg, D3 800IU (20 mcg) once daily since those bloods were done (so don't reflect new supplement regime).
Iam waiting for the DNA/enzyme results i had done re D102 etc just to get more evidence for future management/treatment.
Endo has written to GP to say he wants to explore hypocortisol and possible T3 treatment options as I cannot seem to manage levo whatever way i do it. I increased to 50 over last week. Took as two separate doses. Avoid all contraindications.
Would that be if I have a swollen thyroid it is maybe atrophied or stopping t4 from working andni am just in this continual loop. Problem is it is getting bigger, pressing on my trachea making eating swallowing difficult. Just dont know where to go with it all.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
The problem with 75mcg dose is it’s enough to pretty much shut your own thyroid output off, but not enough to offer full replacement
You were likely feeling terrible because needed next dose increase
Sounds like you possibly should be avoiding Teva levothyroxine (like thousands of other patients)
That's absolutely fascinating and makes so much sense.
I am seriouslu under medicated. It just will take so long now to start feeling well if it 6 wks between bloods and small incremental increases will be another year of this.
Do I just power through the palpitations and how ill i feel on levo, to come out the other side?
No I cant seem to manage tevo at all for some reason. Been on the wockhardt a few months. Was on the northstar accord 50 last year, I think but it made me feel so ill.
What would option be for me to stick to wockhardt and just take several once if increase. Absolute minefield this
Northstar 50mcg and 100mcg tablets are made by Accord brand levothyroxine
Northstar 25mcg is Teva brand levothyroxine
Yes some people only take Wockhardt brand
Wockhardt only make 25mcg tablets
Levothyroxine is approx 90p per pack of 28 tablets
Other brands to try
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Aristo lactose free, only currently available in 100mcg tablets
You could try increasing to 50mcg …..can help tolerate dose increase if you split the dose
Taking 25mcg waking up and 25mcg at bedtime
Retest in 6-8 weeks
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Thank you so much. I am going to make a plan and increase from 25 to 50 alternate days then full 50. Then bloods in 6 wks. I will do iron ranges also as per humanbean's post. Feel more positive now. Just need to manage this swollen gland. Maybe it will return to normal if i am properly treated.
Over last 6 weeks my blood pressure dropping at night.
Regarding your blood pressure lowering at night it would be worthwhile keeping a notebook beside your bed to record the BP values you get so you can show your doctor. Having data to show the extent of the problem is always worthwhile.
Severe palpitations on levo.
Ferritin was 80.5 (13-150).
Your result for ferritin is just a smidgen below mid-range. Ferritin is a measure of your iron stores, which is currently slightly below optimal, and with your range optimal is somewhere between 82 and 110 mcg/L.
The problem is that ferritin can sometimes be misleading. If your CRP (C-Reactive Protein) is high then it could raise your ferritin quite a lot, making it appear that your iron stores are fine. CRP is a measure of inflammation, so the lower the better.
Another issue with low ferritin and/or low iron is that it can cause palpitations and tachycardia (fast heart rate). And someone with low ferritin might have high serum iron, or high ferritin might occur with low serum iron. The differing levels of ferritin and iron should tell doctors different (and important) things about our health. But to save money doctors rarely measure serum iron.
Iron is complicated - and there are a lot of common blood test results that are affected by it.
There is a test called an iron panel which varies from lab to lab but the best tests consist of the following results (with a few variations):
If you ever do such a test post your results on the forum in a new post and ask for feedback.
Cortisol in 400s st 10am on testing. I know it should have been earlier but couldnt get appt any earlier.
If you had had your test at 8.30am - 9am your cortisol would most likely have been a little bit higher. The circadian rhythm for cortisol is shown in this (rather cartoonish) graph:
My goodness- that is so informative. You are all so expert.
Meds- dont know why i just feel so ill on levo but see that im very undermedicated. Not sure what can be done if T3 is not an option or required. Maybe it is this goitre issue that is swelling and stopping conversion. Dont know enough to say.
Blood pressure-I took a note of hourly heart rate and BPs. GP told me to go to A&E which i did and dr there told me my machine must be wrong. It is not though, newly calibrated etc. I take my levo at night and thought maybe that was when the palpitations etc were worst.
Also wondered about the circadian/cortisol link as endo thinks i may have cortisol issues. He just wants to wait for all bloods. But it is z one off cortisol i had done not the full diurnal.
Endo has put me on B6 50mg, thiamine1000mg, B12 1mg, D3 800IU (20 mcg) once daily since those bloods i posted were done. I will prob need repeat testing im sure.
I really appreciate you all taking time to respond. Thyroid is all consuming when you have issues.
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