Hi. I am a 44 year old woman. In October 2020 I had a hemithyroidectomy.
First weeks I was doing great, but then my TSH started to rise and I started to notice hair loss of the outer part of the eyebrow at TSH 3 . At TSH above 4 I felt tired and my doctor put me on levothyroxine 50 MCG.
Soon after my eyelids got swollen one after the other and I had several chalazions.
My eyebrows were still not growing back after being on levo for 2 months so I started to take 50/75 MCG. I stayed on this dose for several months, but I got severe insomnia, dry eyes during night and under eye bags in the morning. Eyebrows were still not growing back.
I even tried 75 MCG for 2 weeks, but I started to sweat at night and had high blood pressure.
Then I went back on 50/75 MCG and even lowered the dose to 50/25 MCG. I finally could sleep again.
Nevertheless I feel out of energy, my eyes are still affected and I have under eye bags all day long.
I feel desperate, don’t know what to do anymore.
TSH =3, T4 and T3 are within range. Reverse T3 is high, but also still in range.
I wonder if levothyroxine is even helping?
Can my tear glands be affected by this medication and cause dry eyes and under eye bags?
Can a high dose suppress the function of my remaining half thyroid gland?
I sincerely hope to find some answers on this forum.
Thanks for reading my message!
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Balou23
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Unusual for small nodules to be treated. Often only larger nodules eg over 1 cm are investigated starting with fine needle aspiration. Unless the nodule so large they affect function, or results on psyical issue eg growth pain, swallowing, breathing they are left.
You likely need more replacement. Taking hormones means they TSH will lower in other words lowers thyroid out put. So initially the dose tops up levels but by 6 - 8 weeks it replaces what the struggling thyroid produces.
Ferritin terribly low. First arrange an iron panel test and if serum iron low an iron supplement required.
Most feel well with TSH under 1. FT4 top 3rd of range & FT3 at least half way. Your FT3 is 50%. Can you show FT4 results & (range in brackets) is 16 - 18 recent results as for too small for range.
I am also very sensible to hormonal fluctuations now. At d15 I have insomnia followed by severe migraine with muscle pain and eye bags even worse on d16. Same around d26 when oestrogen drops again.
I think there is a strong correlation between thyroid hormones and female hormones. Duration of period also fluctuates with higher or lower dose. I think it is a very complex matter and specialists don’t care enough.
Range of FT4 16 (12.0 - 22.0) 40%. This looks too low.
“Iron also low” - Have doctors not offered treatment?
“I am also very sensible to hormonal fluctuations now”. If you mean sensitive, that can be the case. Standard adjustments are at a pace of 25mcg daily change & retest at 8 weeks. Some can tolerate greater & faster alterations other need even smaller / longer changes eg 12.5 mcg (half 25) & 10 - 12 week intervals.
Insomnia, migraine with muscle pain and eye issues & disruption to periods, all very common with thyroid dysfunction. (Both hypo & hyper). & you are sadly correct - doctors, even specialist are not interested in the complexity of symptoms. The focus is getting the number looking like they should (somewhere in range) everything else is not their concern / some other department.
I indeed meant sensitive ;-), in particular to female hormonal changes also known as premenstrual syndrome (PMS). I get severe migraine attacks.
I am a bit confused about the remarks I get on range of hormones. Why is being in the middle not good as under and above is out of range?! It is not a good range then?
Doctors assume a result anywhere in range is acceptable. You need to work out where your optimal is. Many say for explamle there idea FT4 at 75% of the lab range. Someone find they are well at lower levels. But if you are someone who is best at a higher level and your doctor says 2% in range is their job done then you are going to be struggling eith symptoms but told your ok.
very important to also test vitamin D, folate, B12 and ferritin
When hypothyroid we develop low stomach acid and this leads to poor nutrient absorption and then low vitamin levels
On levothyroxine it’s essential to maintain GOOD vitamin levels for good conversion of levothyroxine (Ft4) to active hormone (Ft3);
Unless extremely petite you are likely to eventually be on at least 100mcg levothyroxine per day
Symptoms are often due to being on inadequate dose levothyroxine
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
please add most recent thyroid and vitamin results and ranges
I am taking some vitamine D, B6, B12 and folic acid since 2 weeks.
Ferritine is low, 22 mcg/L (15-150). Should I take iron supplement?
I am afraid to suppress the working of my remaining half thyroid by taking higher dose of levothyroxine. Difficult to find some information about my specific condition.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
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