I have been reading the forum for a couple of weeks and would really like some pointers. I’ll give a brief background. I’m 46 and have a long history of very heavy painful periods and suspected Endometriosis. I’ve had 12 pregnancies and 9 babies. My youngest is 4.
10 years ago I had 3 pulmonary embolisms.
I’ve always struggled with anemia and low ferritin. In my last pregnancy I had an iron infusion as my ferritin was down to 4. My ferritin averaged around 9-16 generally but is now at a hefty 28! This is after spatone as can’t tolerate iron tablets. I have IBS and awful flare ups.
Around 6 years ago dr mentioned routine bloods showed a random thyroid result. 6 months later this went back to normal. This happened several times over next few years. Then last year gp rings me and says that my Tsh is 6.4mg and whilst my other results are normal, results the year before showed I had thyroid antibodies so was at risk of developing a thyroid problem. I asked what the range was and felt it only sounded a bit high and chose not to take any medication.
So, this summer I was wiped out, totally exhausted. Obviously assumed I was dying and asked dr to repeat my bloods. The ferritin came back at 28, so dr was really pleased. They forgot to do the thyroid. So I had that done a few weeks later after badgering gp.
Called in at surgery at reception said I needed to book a 5 min call, all results fine except one.
Dr rings later that week and says as my Tsh is now 16 and I’ve previously had positive antibodies i should start medication now. She knows I'm reluctant so prescribes 25mg. I am to be fair terrified of taking medication and had post partum hypertension after my last baby, left an abusive 26 year relationship and am a single mum, I assume it’s normal to feel exhausted.
After reading here I started taking the thyroxine a week ago. Can someone advise what results I should ask for and how long back? Will they give me this? And dr has advised rechecking blood in December and told me not to go on any forums…
Many thanks for reading (if you have!)
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Mumzy09
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Standard starter dose of levothyroxine is 50mcg, and starting too low can make symptoms worse….so don’t think it’s the levothyroxine making you worse …it will be because it’s too small a dose
Which brand of levothyroxine have you started on
Many people find different brands are not interchangeable
ALWAYS take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Many people take levothyroxine waking, but can be more convenient taking at bedtime (at least 2 Hours after food and only water at least an hour before)
If you regularly get up in the night….can take it then
Levothyroxine must be minimum 4 hours away from iron supplements
Get yourself a weekly pill dispenser so it’s easy to see if you missed a dose …..if you forget….just take as soon as you remember
Bloods should be retested 6-8 weeks after each dose increase or brand change in levothyroxine
Likely to need several further increases in levothyroxine over coming months
Typically dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is around one. Most important results are ALWAYS Ft3 followed by Ft4
Typical eventual dose is approx 1.6mcg per kilo of your weight per day
Unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day
Levothyroxine doesn’t “top up” failing thyroid, it replaces it
Always book blood test around 9am or just before and last dose levothyroxine 24 hours before test
ESSENTIAL to test vitamin D, folate and B12 as well as ferritin
You also need coeliac blood test done
On levothyroxine we need OPTIMAL vitamin levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Folate at least half way through range
Ferritin at least half way through range, and around 100 better
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
1.1.1 Offer serological testing for coeliac disease to:people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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 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
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.
Hi, thank you so much for the info. I have had a coeliacs test done twice over the years and both times it was negative. My eldest daughter however has been really unwell despite a negative blood test and has gone gluten free awaiting an endoscopy as I know the blood test can miss cases and a couple of close friends are coeliacs. I definitely struggle with wheat and another 2 of my children are dairy free.
I guess I’d also be grateful for some pointers on this as it all feels a bit unreal, I asked the dr if it was Hashimotos and she said no.
I take it when I wake and don’t have anything else for and hour. I’ve actually not bothered with iron since starting this as wanted to make sure I didn’t die from the thyroxine. It’s teva brand. I don’t feel worse, in fact for 2 days I felt a bit clearer in my head.
thank you, I was taking a complex multi vit a while back and have previously had prescriptions for Vitamin D.
I will ask Dr to recheck after 6 weeks of the thyroxine so the dose can be increased. She definitely would’ve given me 50mcg but was worried I’d have side effects and panic I think.
My pulmonary embolisms were misdiagnosed for 14 days by 7 different professionals who generally thought I should be sectioned as they believed I wouldn’t be able to walk or feed a baby if anything serious was wrong….(then all did a massive u-turn) so I’ve been very wary of drs and struggled with being not taken seriously.
Your very low ferritin & IBS may be worsened by having low thyroid hormones.
Have you had iron panel done?
The TSH is a pituitary hormone and it signals the thyroid to make more hormone. A high TSH is telling thyroid to make more thyroid hormone (levels are likely low). A low TSH it saying reduce levels - or undetectable TSH stop completely.
Thyroid level are likely high. Doctors focus on TSH but it’s not entirely reliable - it doesn’t tell you where your thyroid levels actually are.
I have undetectable TSH but my thyroid levels aren’t high, (they were previously) it just my TSH behave in a normal way any more.
See if FT4 & FT3 (free Thyroxine & Free triiodothyronine) levels have been tested.
The thyroid makes T4 and a tiny quantity of T3. Most T3 come from the body converting T4 to T3.
Start keeping a record FT4 & FT3. keeping track will help you know of you are on the right level of replacement.
You have a legal right to your results. Ask practice receptionist for a printout of results with lab ranges (ranges vary between labs so essential). Do not accept verbal or hand written results. I have online access to results (useful if available) & so I keep my own copy of records. eg screen shots.
A high TSH and antibodies is criteria for treatment as thyroid levels will gradually decline and it is better prevent levels going low for a longer length of time.
A TSH over 10 mU/L is considered unquestionably in need of treatment. So you are definitely now in need of replacement hormone. A TSH reading can go into the 100s but its the hormone levels which cause the symptoms.
Don’t think of levothyroxine as a drug / medication it is a (necessary) replacement hormone.
Take levo away from food, other medication & supplements (it’s a fussy hormone)
Recommend on here that blood draw appointment are booked for around 09.00 or as early as possible, fast overnight (only water - lots for hydration & easier blood draw) delay levo until after draw, & avoid supplements containing biotin 3 days before draw (can skew results in testing process).
Doing this will show consistent results & shows highest TSH, lowest FT4.
Do you have another blood test scheduled?
It takes at least 6 weeks to see how a dose settles but I think you will be in need of timely increases. Sometimes doctors are willing to delay increases to every few months or longer & some do benefit from gradual increase, but I don’t think that will be to your benefit.
thank you so much for the reply. I will get a copy of my results, Dr just said this time that my t3 and t4 were within range.
I’ve also a history of anxiety and ptsd so my dr is mindful I may get over worried unnecessarily. Although one of the reasons I requested a retest was due to feeling very tired, overwhelmed and anxious.
A Full blood count test red blood cells, white blood cells and platelets so will show if you have good haemoglobin levels.
Ferritin is your iron stores. You can have low ferritin but still have good even abnormal high iron.
Below 30 ug/L is ferritin deficiency. I’d be pleased with 100 which is nearer optimal, Dr find 28 acceptable as close enough.
Once you read through link above you’ll have a fair understanding to discuss with GP. Overwhelming, so take your time.
GP may say no criteria to test iron panel, but if ferritin still low after supplementing - I be pushing for it. Or if getting nowhere - arrange a private test.
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).
Definitely try not to change brand when increasing dose …..only change one thing at a time or you don’t know which is causing improvement/change
anxiety is an extremely common hypothyroid symptom and you should find it slowly improves as your dose levothyroxine is slowly increased over coming year
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