So my thyroid still underactive but every time I increase I get really bad fatigue and heavy muscles and racing heart, my cardiologist has ruled out any problem with heart, doing bloods for thyroid again tommorow also iron again as ferritin dropping but can't start anything until I do bloods, my head feels ok but it's like my body is fatigued also muscle twitching has started again and headaches as soon as I increase, anyone else had problems with increasing, I think it's combo of thyroid and iron but no treatment has been suggested for iron
Last iron results
Serum 11 range 11-27
Ferritin 47 range 30-200
Ferritin was 74 5 weeks prior
Transferrin 33 range 20-45
TFN satn 17 range 15-55
Last thyroid
T4 15.1 range 9-20
Tsh 4.90 range 0.40-4.00
Above results 16/9/19
Seeing endo regarding thyroid which we are slowly increasing, I'm now on 50 mcg 3 x week
Other days 25mcg
I know thyroid needs increasing but think iron is playing a part as well, also why do doctors ignore serum iron, what's the point in testing it if it's ignored? They are saying I'm within range?
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sbadd
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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 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
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
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve/maintain by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
So vitamin D is too low and needs supplementing to bring to optimal levels (at least around 80nmol and around 100nmol may be better)
Vitamin D levels should be high at end of summer
With Hashimoto's we often need to supplement all year. Trial and error what dose you need
Testing twice yearly recommended
Vast majority of Hashimoto's patients are not coeliac, but are gluten intolerant ....the only way to know if that includes you is to try strictly gluten free diet for 3-6 months minimum
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
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
Have you tried splitting your dose. Levo and me don't get on very well but I managed to work up to 100mcg per day by taking half dose am and have dose pm. I increased by 12.5mcg when I had an increase as 25mcg was too much. My body also did not like different doses on different days.
how much are you increasing by? I get temporary symptoms in increasing for the first 5-6 days, then it gets better. I get more fluctuations the first few days, then less and less, until I need to change again and go on a little rollercoaster. Iron could play a role for sure, but your TSH is high, other readings low, so this could be your body getting used to more meds.
I ended up in A and E after increasing my Levo by 25mcg, as palpitations so bad and pulse very high. This was very frightening. I now only increase by 12.5 mcg. You can get a tablet in this dose, so you don’t need to cut up tablets.
think iron is playing a part as well, also why do doctors ignore serum iron, what's the point in testing it if it's ignored? They are saying I'm within range?
I'm sure iron is playing a part in at least some of the problems you are having. I have permanent iron problems too, and I have to take a maintenance dose. If I just stop taking iron when my ferritin gets up to a semi-decent level it will just drop like a stone. Doctors usually stop prescribing iron before people have fully optimised their levels. Doctors, in fact, don't seem to understand the idea of "optimal" nutrients.
I suspect some of your iron problems could be caused by
a) stopping supplementing before you're levels are optimised
b) not taking a maintenance dose to keep your levels where you want them
c) not identifying and fixing the cause of your iron dropping so quickly (this is the hard one! and it may not always be possible to identify and fix)
Some common reasons for permanently poor iron levels are things like
a) very heavy periods
b) low stomach acid which prevents you extracting iron from your food
c) perhaps you have a bleed somewhere in your gastrointestinal system i.e. somewhere in your oesophagus, stomach, duodenum, small intestines, large intestine/bowel, rectum
d) your diet has too little iron in it
e) your vitamin C intake is too low
Questions
a) Do you take any prescribed pills besides thyroid hormones?
b) Which supplements do you take?
c) When you take iron what substance are you taking, what dose, and how many times a day?
d) How long do you supplement iron for before stopping it?
e) Do you eat meat?
f) Are you on a permanent diet?
g) Do you have gut problems, and if you do what do you take for them (if anything)?
Your iron results are very poorand you need to improve your levels to have a hope of feeling more human and also hopefully eventually tolerating thyroid hormones.
If you could answer the questions in my previous post then I may be able to give you some ideas about how you might improve your levels.
Thank you you did give me advice on the iron few weeks back, I don't take any other supplements, don't eat a lot of red meat, however my iron in Dec before b12 injections or any other problems was as follows
Serum 16.1 range 10-30
Transf 2.38 range 2.10-3.80
Saturation 27 range 15-45
Ferritin 56 range 30-200
These results were on same diet as now with no supplements for years, I'm thinking I need to be back at these ranges
I have not tried supplements yet as I had cardiologist appt and endo next wed, so didn't want to influence results, but may start after I do bloods this morning
Just wanted to add that I have felt a lot better since increasing Levo and optimising vitamins, following advice on supplements from forum members. Going Gluten free has also helped me. Hope you feel better soon!
Yes I've been on meds for fifteen years no probs till this year after b12 injections, started to have overmedicated symptoms, so had to stop meds and restart so slowly building back up, it's like I've become sensitive, but I also think my iron needs upping
I can offer a couple of anecdotal experiences as an amateur at this.
I am on levo 18 months now, when I started on 25mcg a day last year I had 3 spikes in the first month of very hyper symptoms. Heart racing & hot flushes, each time they settled down within 48 hours and after 3 incident did not return. I am led to believe starting levo and any subsequent dose increase takes time to stabilise.
Last autumn I had worsening of conditions so I upped my dose from 25 to 37 mcg a day, all good and settled quickly so reduced dose. Then again later in new year I still had continuing symptoms so I tried 25 to 50mcg which included a change of brand, I went a it 'bonkers' with both hypo and hyper symptoms simultaneously, (whic initially I felt was the different brand but ultimately proved not ). So I reduced back to 25mcg but wonder now if I should have stuck it out ( I lasted 6-8 weeks before folded).
As it happens have had a very good stretch for 6 months but have spent summer on my boat and feel sunlight and healthy living played its part here. Going into winter am just starting to feel the symptoms again but am following advice on here re: Vitamin D and other vitamins so hope to fight off return to prior level of symptoms.
Here on in having read this forum intensively over summer I am starting a regime of private blood testing to understand my levels of thyroid and vitamins and find an optimum state.
My learning has been....
- Levo is just part of the solution,
- Any change to Levo dose or any other tweaks it takes time to stabilise.
- you have to pay real attention to this thing (which can be hard when working hard), its like a game of sleuthing to identify specific symptoms and remedies and actions.
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