My doctor recently lowered my synthroid dosage bc my tsh was a bit low and my t4 was high . Now I'm experiencing many symptoms such as trouble swallowing , trouble breathing, feel like I'm having a panic attack, hair loss, weight gain, hoarseness of my voice, feeling dizzy , feeling cold , cracked nails . I think the dosage may be too low. I was on .75 mcg 3 times a week and .50 the other days. But now she has me on .25 mcg 3 times a week and .50 the other days. Looking for help please. What are your thoughts? Thanks
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80sgirl1968
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It sounds as if you are under medicated. However it would help us to help you better if you could share with us here any recent blood tests you’ve had, with their ranges, especially TSH, FT3, FT4, vitamin B12, vitamin D3, ferritin and folate. 🙂
Hi there, Since she lowered my dosage my numbers are 0.39 for tsh and 12 for t4. Ferritin is 47 . When I was on the higher dosage of .75 3 times a week and .50 the other days my numbers were tsh 0.41 and t4 16. I felt good when I was on this dosage. But she thought my dosage needed to be lowered bc the tsh was a bit low . But 0.41 is within normal range . 0.32 to 4.00 mIu/L is the reference range.
It would be good if you could include ranges for these results as they vary from lab to lab and country to country.
Nevertheless, it seems you are caught with a doctor who is making dosing decisions based on TSH when it’s more important to look at the active hormones, which are FT3 and FT4. It looks like she’s not measuring FT3 (which is BTW not at all uncommon). Based on the ranges I’m familiar with, it looks like your T4 is at the bottom of the range. And since you need T4 to convert it to T3, it’s no wonder you’re feeling bad.
The other thing I’d say is you are on a woefully low dose of Levothyroxine. 50mcg daily is generally a starting dose and you’re not even on that. Plus your current dose is a big drop from previous.
If I were you, I think I’d speak to your doctor ASAP and tell them your health has deteriorated since you came down in dosage. As you say, it’s not even as if TSH was super low. And can you please reinstall your old prescription.
Thank you so much for responding. I really appreciate it. I'm sorry I didn't list the ranges . And yes she was basing the lowering of the dosage on the Tsh number. Here they are :So my Tsh was 0.41 . The range is 0.32 - 4.00 My T4 was 16 and the range is 9 - 19 . I felt good on this dosage . It was 0.75 three times a week and 0.50 the other days.
Sorry to hear you had a bad night. And well done on taking the 50mcg. One thing I discovered thanks to this forum is that, when you start taking meds, your thyroid produces less T4 of its own. So you can end up feeling worse for a while till you land on the right dose for you. Take care!
Please always add ranges (figures in brackets after each result)
Standard starter dose of levothyroxine is 50mcg daily and dose is increased slowly upwards in 25mcg steps, until Ft3 is at least 50-60% through range. Usually Ft4 at higher end of range. TSH often low
Essential to regularly retest vitamin D, folate, ferritin and B12 and maintain these at optimal levels
What vitamin supplements are you currently taking
Do you have Hashimoto’s and are you on absolutely strictly gluten free diet
A doctor who doses just by TSH will tend to leave patient under medicated
Hi, thank you for responding! Yes, she based it on the Tsh . She said it was low. Sorry I didn't list the ranges. Here they are : I was 0.41 for tsh and the range is 0.32 to 4.00 and my t4 was 16 and range is 9 to 19. Yes, I take supplements too. Vitamin D3 , b12, vitamin c , iron , multivitamin, magnesium , lutean.
I have nodules growing on my thyroid and a goiter so I was put on meds in 2011 to stop the nodules from growing. In 2011 I was put on 25 mcg but my dosage as changed a bit over the years. I hope this answered everything .
Hi there, Thank you so much for your response back! The test was done in the morning . Yes, I would have eaten before going . Did not know I was to fast . ? She doesn't do T3 ever. I've been on the lowered dosage since Feb 1. It is synthroid that I'm on. On the bottle it says synthroid 25 mcg and levothyroxine sodium 25 mcg. Yes, its always the same brand I believe. The pills are pink. This one is taken Monday, Wednesday, Friday with the 50 mcg on the other days. On the days I'm taking the 25 mcg I feel dizzy.
Testing early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test....is a patient tip
Many medics unaware of significance
When under medicated, low stomach acid leads to poor nutrient absorption and low vitamin levels
Low vitamin levels tend to lower TSH
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Wow! Very interesting! My doctor never advised me to do any of this before the bloodwoek ! Good to know. I will do this for sure next time. I will have a look at the sites you gave me as well! Thank you very much for your help ! I really appreciate it. 🙂
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Update: I wanted to give an update. I had my doctor's appointment on Friday . She wants me to stay on this low dose of 50 mcg. for 5 weeks and then go for bloodwork. Ughhh
On Saturday night I had another episode of couldn't breathe . I felt like I was suffocating and trouble swallowing . Feels like there is a lump when I swallow. Very slow heart beat of 52. I feel like I'm going to pass out. I can always smell cigarette smoke too. I called Emergency Telehealth and they said they would have a doctor do a phone call in the morning at 10. This doctor wants an ultra sound done . I'm going next Thursday. She is concerned about the goiter I have. She also wanted bloodwork done. I got these results today.
When adequately treated Ft4 should be near top of range
Currently your Ft4 is rock bottom
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
You need Vitamin D tested
Ferritin is terribly low
You need full iron panel test for anaemia
Low iron or ferritin can cause breathlessness
Are you vegetarian or vegan?
Look at increasing iron rich foods in diet
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
Hi , Thank you for the quick reply. I take an iron supplement daily and have been for years. I also eat red meat atleast 3 times a week . I didn't expect it to be this low at all . I did stop taking it for 5 days before the test.
My family doctor is doing all those tests in 4 weeks . This was the bloodwork the Emergency doctor wanted.
I'm going to start taking my old dosage tomorrow which is 75 mcg 3 times a week with the 50. I felt good on this dosage . Then after 4 weeks I'm going to go for the bloodwork that my family doctor wants done . I'm not following her dosage recommendation!
hi there , well the fT4 result at the bottom of the range clearly shows that your current Levo dose is too low , and so therefore the TSH is a bit on the high side, usually nearer 1 or below is where people feel well.
Hopefully if you show GP these results they will see there's no need to make you wait another month before putting dose back up a bit.
these new results seem to confirm what we all thought .. ie .. there was no need to reduce your dose in the first place.
TSH is a pituitary hormone, not a thyroid hormone, it reflects the hormone level in the serum. High TSH = low hormones and the converse......but that is barely the start of a diagnosis. When medicated TSH should be close to 1.
Did your GP ever ask how you feel or are they just diagnosing by numbers? If you felt good on previous dose you need to have that reinstated!
We really need any labs you have , including the ranges to know exactly what is going on
I guess your medic is another who isn't up to speed on thyroid treatment......thats why over 100,000 patients have arrived here!
Modern medics are told that TSH is the gold standard test...rubbish, as research has proved.
We need to test
TSH
FT4
FT3
Vit D
VIT B12
Folate
Ferritin
Antibodies for autoimmune disease/ Hashimoto's
It is essential for good thyroid function that the nutrients are optimal, medics often don't understand this
50mcg is the starter dose for people other than the very young or very old when 25mcg is given.
You are undermedicated and the high (how high?) FT4 possibly indicates poor conversion of T4 the storage hormone to T3 the active hormone....hence your symptoms. Just another thought.
Just noticed that your ferritin is too low
Initially optimise those nutrients and ask for your former dose, then test again after 6 weeks. Either ask your GP for a full thyroid function test or do as many of us do and test privately.
Hi there, Thank you for responding! I'm going to talk to my family doctor on Friday. I think I'm going to try and go on my higher dosage I had been on. I felt so much better then and my hair felt better too. This specialist based her decision on lowering of my dosage bc she said my tsh was low but its not .it was in normal range . The range for tsh is 0.32 to 4.00. My t4 was 16 . The range for it is 9 to 19.
Hi there, I found some bloodwork results from 2019 that show my antibodies. Maybe this will lmk what my diagnosis is ? Hypo or Hyper? My Thyroglobulin Antibody is 20 . The range is <40 kiu/L
My Thyroperoxidase Antibody is 82 . The range is <35 kIU/L. I was 51 years old.
High TPO antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Low vitamin levels are EXTREMELY common with Hashimoto’s
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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 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
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.
Wow. Thank you for letting me know this. I will definitely look at the sites and especially looking at the leaky gut syndrome. I do take rabeprazole at night before bed bc I suffer from acid reflux. I'm going to speak to my doctor on Friday and ask for a bunch of bloodwork to be done. I really appreciate all of the info. You sent me! Thank you very much 🙂
She lowered you a lot! I don't think there was any reason to lower meds at all. You weren't over medicated. The aim of medicating is to treat symptoms not reach perfect numbers which can vary across the day - gently remind you doc and request to go up back as you were.
You need to see a different specialist but that's often really hard to do. Again a gentle reminder of the NICE guidelines aim to treat symptoms to a useful. But also I do a lot of shmoozing and asking for their support to get better - impress upon the impact on your relationships and they'll see that as a bit of a red flag.
This GP clearly doesn’t know what she’s doing. She’s taken away much needed hormone medication and now you’re hypothyroid. Honestly I despair. How hard can it be. I’m so sorry you’re going through this. I’ve been there and I know how awful it is. Hope you get it sorted. My advice is to read up on thyroids. Thyroid Patients Canada is also an excellent site with lots of good advice based on science.
Yes, she is an idiot and I'm paying the price for it. I'm in the Ottawa area . Do you know of any good endocrinologists? Or how I would find a good one. Thanks
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