I've received my results from a Blue Horizon test today.
Here they are for comment and any advice please.
I have felt severe fatigue for quite some time now and have noticed that when I take my Levothyroxine as prescribed I suffer from very noticeable anxiety with rapid heartbeat and overheating around 2-4 hours after falling asleep. I would prefer not to take Levothyroxine after the consultant telling me 5/6years ago that I am 'one of the small minority of people for whom Levothyroxine doesn't convert effectively' but that he was unable to help me with anything else (following a 3 month trial of T3 which didn't provide enough improvement in my symptoms for him to consider it worth continuing with).
I have, this month received Teva (100 mcg) and Accord (50mg). I receive a different mix every month but don't recall having Teva recently if at all. (I'm sure I must have in the days before I became aware that there were different brands)
My other major symptoms of ear fullness/deafness & severe itching (very long standing symptom for which I need ear suctioning every 3 months (over production of wax and severe narrowing of ear canals), and also the relatively recent symptom of head itching and raised bumps on my scalp and around my ears is getting worse.
I also have blurry vision this last few weeks. All my lifelong symptoms continue but I have learned to live with most of them. The ear itching though is relentless and wakes me up several times each night and I am now losing my hearing.
Before my test I had been taking my Levothyroxine as prescribed and left 24 hours after last dose before the 9am Monday test. I have since been taking less Levothyroxine and yet feeling slightly better on the anxiety front. I had taken no supplements in the week or so before my test.
I am ready to add in some T3 but have no real idea how to go about it with the 150 micrograms of Levothyroxine I am prescribed.
I understand my results enough to know that my dose of thyroxine needs increasing and that my cortisol was high on this random blood test but not sure how significant this is or what I can do about it.
So here are my results:
Biochemistry
CRP 0.99 <5.0 mg/L
Ferritin 90.4 13 - 150 ug/L
Magnesium 0.94 0.66 - 0.99 mmol/L
Hormones
Cortisol (Random) H 639.0 6am - 10am 166 - 507 nmol/L New range
4pm - 8pm 73.8 - 291
Thyroid Function
TSH H 11.10 0.27 - 4.20 mU/L New range & unit
T4 Total 97.2 66 - 181 nmol/L
Free T4 14.9 12.0 - 22.0 pmol/L
Free T3 3.86 3.1 - 6.8 pmol/L New range
Immunology
Anti-Thyroidperoxidase abs H 116 <34 IU/mL New units
Anti-Thyroglobulin Abs H 458 <115 IU/mL New units
Vitamins
Vitamin D (25 OH) 89 Optimal 75-200 nmol/L New range
Adequate 50-<75
Insufficient 25 -<50
Deficient <25
Vitamin B12 521 145 - 569 pmol/L
Serum Folate 25.00 8.83 - 60.8 nmol/L
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Shebbie
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If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood 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
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
This might suit you better for coping with increased dose levothyroxine
I have since been taking less Levothyroxine and yet feeling slightly better on the anxiety front. I had taken no supplements in the week or so before my test.
I am ready to add in some T3 but have no real idea how to go about it with the 150 micrograms of Levothyroxine I am prescribed.
How much have you reduced levothyroxine ?
Reducing levothyroxine will take Ft4 below range
Normally we recommend
If Ft4 is right at top of range eg 21-22 then reduce dose by 25mcg and 4-5 days later add 5mcg T3
If Ft4 is mid range don’t reduce levothyroxine, and add 5mcg T3
If Ft4 is below mid range….initially increase dose levothyroxine by 25mcg and retest in 6-8 weeks
Your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Did you know that you have Hashimoto’s?
Have you had coeliac blood test done
If not get coeliac blood test done BEFORE cutting gluten out for 3-6 months
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thank you so much for walking me through what I need to do in response to my results at this test.
I'm happy there are things I can start to action and will as soon as the Christmas 'interruption' is out of the way (postal strikes etc delaying samples)
I am going to work through all your suggestions and keep a diary of what and when I've done and how I'm feeling as a result.
I'm so grateful you are here to help in this way. Thank you so much
Slightly off topic to do with your ear. Have you been tested for Acoustic Neuroma it sounds like it to me. Especialy as you are now losing your hearing. I have one too.
Hi I really don't know if this could be an issue for me but it sounds interesting in that the symptoms do sound similar.
I've been having my ears suctioned for many years now because without that I would have impacted wax in my ears and be totally deaf. It is done by a consultant owing to the narrowness of my ear canals. He has never mentioned the possibility of neuroma but then again he isn't really interested in my progressive hearing loss in one ear in particular and has never offered a hearing test. This is at a private hospital under nhs funding. I chose to go there during lockdown when I was trying to avoid crowded places (previously I had gone to an nhs clinic in a local hospital where hearing tests were carried out on me periodically.
Last time I went to the private clinic the consultant hinted that ear suctioning is being withdrawn as an nhs treatment so I have no idea how I will cope at that stage. I need to go and see my gp to discuss this further. Thank you for incentivising me to do that sooner than later.
I hope your condition continues to be well managed. Thanks again
As regards your ears, I have a problem of long -standing with my left ear, and have had it syringed 4 times in the past. It comes and goes, and I bearly hear anything , then after maybe a month or 6 weeks or so, things I could barely hear will be really loud. I now know it will be thyroid related.
Very recently it happened again. This time I believe that being forced to accept Wockhardt liquid levo was the cause, as it started as soon as I took it, alongside a thumping sore head every day I took it. I didnt want this brand because it contains maltitol, which is maize/corn.
You may be having reactions to a variety of excipients in a variety of tablets. Lactose and mannitol do not agree with me either.
I've been told by the consultant that I have Keratosis Obturans and have asked him if this could be associated with something I am consuming or with my Hashimoto's. He just says not, but he likely isn't aware of any connections. It doesn't mean they don't exist.
Yes, my Levothyroxine changes by the month. I need to speak again with my gp about this as the pharmacist says he just uses what is sent to him and can't guarantee I will receive any particular brand.
This month sees me on a combo of Teva and Accord brands.
It's a real uphill battle with minds that are unwilling to consider that there are better ways to treat us. And yet I am grateful for all the help I am given
I think the excipients in all the tablets might be a trigger for you. Very interesting what you and Brightness 14 have said re. ears. Usually , I don't lie on my left side as when I wake in the morning I may have to slowly peel my ear off the pillow, as it is excruciating. The legs of a pair of glasses can hurt to wear also, so think in my case eustachian tube involved.
Think I'll make a point of changing my pillowcase on pillow much more frequently as not doing so very frequently, might be contributing to the problem. I wouldn't have thought of that otherwise, but it makes sense to do so going forward, in light of what I've learned from you both.
Ha ha aren't we all struggling with that brain issue? I'm glad you don't have neuroma because it sounded hard to live with, although I'm not sure how much easier Cholesteatoma is to cope with.
My consultant had decided in the last 2 years that I have Keatosis Obturans which is an abnormal overproduction of skin in my ears. This skin accumulates in the wax that my ears overproduce and is then all trapped against my eardrum as it can't get out.
The only fear I have is that when it was suctioned out (and I have had this done every 3 months since I was 50 (now in my late 60's) I used to have normal hearing but now my hearing isn't much improved even after ear cleaning.
I am concerned about the safety of perpetual ear suctioning as one gp advised against it many years ago, whereas the others in the group advised that it was harmless.
What things we have to bear as we get older especially with thyroid disease
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