I was diagnosed in 2014 with hypothyroidism and had symptoms of fatigue, depression, lethargy, cold all the time, etc. I had gone from a successful marathon runner to a sad and ill in a matter of months. I started taking Levo (125mg) and although I improved slightly I have never regained my vigor. I have also gained 5 stones and am still depressed and experience common hypo symptoms daily and struggle to manage my life.
I struggled with infertility and was lucky to be successful with IVF and now have 3 children.
I am a shell of my former self and struggle to function daily with low energy, fatigue, muscle aches, joint pains, weight gain, inability to lose weight. My GP refuses to treat me with anything but Levo but has written an open referral letter so I can see someone privately. Who should I see?
I did a Medichecks blood screen in June 2021. I missed my Levo dose the evening before and did the blood fasting.
June 2021Range
TSH 1.72 mU/L 0.35-5.00mU/L
FT4 20.4 pmol/L 11.00-23.00 pmol/L
FT3 5.5 pmol/L 3.1-6.8 pmol/L
Thyroglobulin antibodies 164 0-115 IU/mL
Thyroid peroxidase 118 0-34 IU/mL
Vit D 85 nmol/L 50-200nmol/L
B12 108 pmol/L 25.1-165 pmol/L
Folate 6.8 ug/L 3.90-19.80 ug/L
Ferritin 35 ug/L 13-150 ug/L
I'm not currently taking any supplements. I have been a vegetarian for almost 30 years (I hate all types of meat and most fish).
Any advice will be gratefully received.
MrsT79
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MrsT79
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Your FT4 and FT3 levels are pretty good at 78% and 65% through their ranges respectively.
Ferritin 35 ug/L 13-150 ug/L
This is a problem. If your level was less than 30 then NICE class that as iron deficiency. You're not much over that and ferritin should be half way through range with some experts saying that the optimal level for thyroid function is 90-110.
It would be a good idea to ask your GP to do an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. Whatever the result you need to increase your ferritin level. Symptoms of low ferritin include:
◾Weakness
◾Fatigue
◾Difficulty concentrating
◾Poor work productivity
◾Cold hands and feet
◾Poor short-term memory
◾Difficulty remembering names
◾Dizziness
◾Pounding in the ears
◾Shortness of breath
◾Brittle nails
◾Headaches
◾Restless legs
Folate is also low and is recommended to be at least half way through it's range, which would be 12 plus with that range. You would probably benefit from supplementing with a good quality, bioavailable B Complex such as Thorne Basic B.
When taking B Complex we should leave this off for 7 days before any blood test as it contains biotin and causes false results when biotin is also used in the testing procedure (which most labs do).
Great advice on the B vitamins and potential iron deficiency.
My GP did a full blood count in May 21 and was satisfied no action was needed. Would this be the blood investigation for anaemia? Do you think the results look OK?
Total white cell count 8.26 10*9/l 4.00-11.0010*9/l
Haemoglobin estimation 141 9/l
Platelet count 259 10*9/l 140-440.0010*9/l
Red blood cell (RBC) 4.64 10*12/l 3.80-5.8010*12/l
Haematocrit 0.396 ratio 0.37-0.47 ratio
Mean corpuscular volume (MCV) 85.3 fl 82.00-98.00 fl
Mean corpuscular haemoglobin (MCH) 30.4 pg 27.00-32.00pg
Red blood cell dist. Width 12.6% 11.80-14.00%
Neutophil count 6.02 10* 9/l 1.60-7.5010 *9/l
Lymphocyte 1.54 10* 9/l 1.00-4.0010* 9/l
Monocyte 0.58 10* 9/l 0.20-1.0010 * 9/l
Eosinophil 0.09 10* 9/l 0.04-0.4410 * 9/l
Basophils 0.03 10* 9/l 0.00-0.1010 * 9/l
Nucleated red blood cell count 0 10* 9/l 0.00-0.0110 *9/l
I saw my endo initially via AXA insurance; able to have an initial and a follow up consultation. However after this AXA wrote to me and said I could no longer claim to see the endo for routine appointments as my thyroid condition is ‘chronic’ (which really shocked ms at the time!)However, I was able to claim to see other specialists for associated symptoms (to which endo referred me) eg I saw cardiologist when I had palpitations etc. I always email my Medichecks tests to my endo prior to my appointment, as tests often cost more at private hospitals (and AXA only paid for initial round of tests). Best wishes to you!
I did a Medichecks blood screen in June 2021. I missed my Levo dose the evening before and did the blood fasting.
June 2021Range
TSH 1.72 mU/L 0.35-5.00mU/L
FT4 20.4 pmol/L 11.00-23.00 pmol/L
FT3 5.5 pmol/L 3.1-6.8 pmol/L
Thyroglobulin antibodies 164 0-115 IU/mL
Thyroid peroxidase 118 0-34 IU/mL
So you left 36 hours between last dose levothyroxine and bloods
Should be 24 hours
So Ft4 result would be higher
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
Once you start on vitamin B complex
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
Likely to need to reduce levothyroxine dose slightly and add small dose T3 alongside
But first need to get all four vitamins optimal
Plus if not already on strictly gluten free diet have you had coeliac blood test done
If not get this test before trialing absolutely strictly gluten free diet
Approx where in U.K. are you
Many private specialist thyroid endocrinologist are doing consultations on zoom
Would you recommend repeating all my blood tests before I start taking supplements? Yes I would have been Levo free for 36 hrs when I did my Thyroid blood tests.
Poor gut function with Hashimoto’s 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 are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten 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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Likely to need to reduce levothyroxine dose slightly and add small dose T3 alongside
But first need to get all four vitamins optimal
Plus if not already on strictly gluten free diet have you had coeliac blood test done
Is the reduction in Levo and addition of T3 something a private doc will advise?
Will I be able to afford the T3?
You recommend redoing my Thyroid bloods with only 24hrs without Levo and suggest this may increase my FT4 result. Would that make it more likely my meds needs adjusting?
Should I just pick a Dr from either of the lists on Thyroid UK website that will take my Axa insurance? I’m in Lancashire but are most online now anyway?
I would see who you can travel to from the list then ask on the forum for feedback on them to be sent to you in a private message. We can't discuss individual doctors on the forum but it's OK to name them to ask for feedback by PM.
Plus if not already on strictly gluten free diet have you had coeliac blood test done
If not get this test before trialing absolutely strictly gluten free diet
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Supplement with B vitamins to raise my B12 levels
No, your B12 level isn't too bad, we suggest over 100 for Active B12 and yours is. B Complex was suggested to raise your folate level. What I did say is:
Folate is also low and is recommended to be at least half way through it's range, which would be 12 plus with that range. You would probably benefit from supplementing with a good quality, bioavailable B Complex such as Thorne Basic B.
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Request further tests regarding potential iron deficiency
Yes. Ask GP for an iron panel. Your results don't suggest anaemia but you can have iron deficiency with or without anaemia.
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Hold off from seeing an endo until I have retested my bloods in 6-8 weeks
Why do recommend delaying my appointment with an endo?
So that you have up to date blood tests with new, correct levels. No point in an endo basing treatment on old blood tests where levels could have changed after supplementing and trialling a gluten free diet.
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How long should I not take supplements for before a blood test?
As mentioned above, when taking B Complex we should leave this off for 7 days before any blood test as it contains biotin and causes false results when biotin is also used in the testing procedure (which most labs do).
Anything else you can take but on the day of the test take them after the blood draw not before.
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