Hi I have been told for 20 years after the birth of my son, that I have fibromyalgia. About 4 years ago I was told that my thyroid was slightly low and I was put on levothyroxine. It increased the inflammation and pain and I came off it. My GP said that my thyroid was only borderline low and it would be ok. Just recently I started doing intermittent fasting to see if I could help with some of my symptoms and to see if I could lose weight. I was always slim but since I became ill I have gained so much weight and even though I do not eat diary or wheat and eat really health I have not been able to loose weight. Even with the intermittent fasting, I was not loosing weight, thought it may have been cortisol and asked GP to check my levels. They say cortisol was ok but that they had found antibodies to thyroid and low thyroid. So again put me on Levothyroxine. The same thing happened, lots of inflammation and nerve pain all over my head. I haven't slept for two nights. Called the GP this morning and she thinks that if I carry on taking them my body will adapt. I am not sure what to do because this doesn't feel right. I wonder if anyone else experience this when they first started to take them? Also I asked her about Armour and she said that you cannot get this on prescription in the UK without going private. I thought it was at the GPs discretion, that many were reluctant to do this because it has no license in UK and therefore they feel like it is a risk? So I just don't know what to do I feel so sick of being ill. Please if anyone can help me, can you advice, I feel so alone with this.
Old illness, New Diagnosis: Hi I have been told... - Thyroid UK
Old illness, New Diagnosis
What are your results?
You need TSH, FT4 & FT3. TPO & TG antibodies.
Also important to test folate, ferritin, B12 and vitamin D, if these aren’t optimal levo will not work well.
What was your cortisol result & time of test?
You can obtain printouts of your blood test results via practice reception (don’t ask doctor) or arrange online access for GP records, which is extremely useful.
Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.
When the doctor says “ok, fine or normal” it means it’s in range, even if only just in range. It doesn’t mean optimal or what normal for you.
If you are borderline, especially when referring to thyroid, where the ranges are wide you a more than likely hypothyroid.
What dose are you taking? Do you also have same brand each time? some brands have ingredients which adversely affect people, so staying with same brand one you know suits you is best.
You’ll need to retest and increase dosage In 25mcg steps until TSH around 1 and FT4 & FT3 in top third of range.
When you test, do you test early in morning after fasting except water? This give highest TSH & lowest FT4. Doctor often think this is not relevant and don’t advise about this. Supplements containing high levels of Biotin (B7) can skew test results. Check labels & avoid 1 week before draw.
Many have diagnosis of fibromyalgia but report they feel better once adequately medicated.
Too few calories when fasting intermittently will affect FT4 to FT3 conversion and could worsen symptoms, especially of any nutrients are deficient.
The NHS now treat synthetic T4. Many years ago naturally desiccated thyroid (NDT) preparations (like Armour) were used, some do better as they contain all the thyroid elements. I don’t know about private prescriptions & Amour but I’m sure others can advise.
Thank you for response I am not sure what results were but GP said not a lot under and just that there were antibodies. She said Cortisol was in range and it was done in the morning. Before eating or drinking. I am on 25 mcg which I think is the minimum dose. The brand is Teva. I will ask for test results . Also I have a bad reaction to Vit D even though I am low in it. I cannot understand why I have such a reaction to it . If I take even just a small dose I literally cannot get out the bed because I just wanted to sleep and chronic fatigue goes through the roof. I will ask GP for test results like you advise. Thank you.
Definitely get a hold of your results. “not a lot under” is doctors speak for clearly well below & “there were antibodies” likely means your are positive for autoimmune thyroiditis.
England contractually mandated to provide online access (other areas vary)’. If not, paper copies should be supplied.
Cortisol is highest in morning and lowers through today. There are usually two reference points. GPs don’t know how to read them & look at if they are in range.
50mg is startdard starter dose unless over 65 or have heart issues, does that apply?
Teva contains mannitol which causes adverse reactions in many people, I think it’s one of the few 25mcg & lactose free so often dispensed. Ask to try another brand? Split a higher dose pill if required.
Bad reaction to Vit D may also be a reaction to a filler. Popular choice is “better you” mouth spray. The red version include K2 which is a co factor and directs calcium to bones & teeth and away from blood vessels where you don’t want it.
Thank you so much, I will try those things. Though regarding Vit d, I have tried taking with Vit K and I have tried liquid and many different brands.
Scarletmoon
What brand of Levo are you taking?
Different brands have different fillers so it's always worth trying another brand if you don't get on with what you've been given.
Many people don't get on with Teva, this is because it's a lactose free brand and mannitol is used instead of lactose, and it seems that the mannitol is the culprit. However, other fillers in other brands can cause problems but it's Teva we hear most about.
Also, what dose? Some people need to start with a very low dose and build up very gradually.
Also some people are better with a liquid Levo but it's much more expensive than the tablets so you'd probably have to try all the brands of tablets before trying the liquid version.
Thank you for your reply. Yes it's Teva and I am taking 25 mcg which I think is the lowest dose. Will have a look at the other ingredients you mention.
Scarletmoon
If you are taking only 25mcg, that is a starter dose for children, the elderly and those with a heart condition. If you have been on this dose for 4 years then it would seem that you are very likely undermedicated. The average dose is around 100-150mcg.
Please obtain your test results and post them on the formum, along with their reference ranges, for further help. If you don't have online access at your surgery then ask the receptionist (not the doctor) for a print out of your results and the ranges will be at the side of the results, sometimes in brackets.
For a full picture we need to see:
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
Having likely been hypothyroid since the birth of your son, it can be difficult to start on levothyroxine initially
Request vitamin D, folate, ferritin and B12 are tested
Likely to be low
Getting these to optimal levels helps tolerate increasing dose levothyroxine up
Standard starter dose of levothyroxine is 50mcg
Is this what you have been prescribed
This is only a starter dose, bloods should be retested 6-8 weeks after each dose increase
Many people find different brands are not interchangeable
Which brand of levothyroxine have you started on ?
As you are on dairy free diet you will need lactose free levothyroxine
That’s Teva brand or Aristo brand
Teva make 25mcg, 50mcg and 100mcg tablets
Aristo only make 100mcg tablets
Alternatively liquid levothyroxine, but this is usually only prescribed via endocrinologist as it’s expensive
Yes I think folate and other b vits may be low. I have not been tested but think I may have methylation gene. Also low vit d but struggle to take it because I have a bad reaction, when I take it I feel so tired I can't function. To be honest I think a lot of this comes from gut problems and IBS and not being able to absorb nutrients properly. Thank you for taking time to reply.
Low thyroid is a cause of gut problems. Things don't move as they should, insufficient stomach acid and enzyme is produced. This is also why hypo causes constipation.
I can’t personally comment on your situation. I have Hypothyroidism, take Levothyroxine, have sleep problems and can’t lose weight either. I think it’s because they don’t check all your thyroid hormones / Ferritin etc (from advice I have received in support groups) so I’m not properly medicated. My mum has had Hypothyroidism since the 70’s and now also has Fibromyalgia so it does make me wonder if there’s a connection and whether her taking Levothyroxine is making her Fibromyalgia worse. Some days she is in terrible pain that just doesn’t shift with pain killers. It feels like a no win situation that just goes round in circles. This kind of illness would benefit from a private health care system (though I’m not knocking NHS). In the meantime, we have to do what works best for each of us and almost diagnose ourselves! 🙁
I can vaguely remember that the late Dr Skinner thought that poor fibro may be down to thyroid levels being off kilter so need to be looked at to check it out.
Thank you for your reply, yes there is a big connection between fibromyalgia and low thyroid. If you Google it there is a lot of information. Sometimes I think the diagnose is confused and many of the symptoms are similar.
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