Hi all, I’m the summer I had a goitre removed from my thyroid and told they’d take half my thyroid with it. I was told not to worry the other half would kick in. The lump was undiagnosed benign/malignant which is why they recommended removing it. 14 years ago I had the same operation but was told they’d only removed ‘part’ of my thyroid.
Subsequent the current op my thyroid dropped to the floor and I have been on Levi thyroxine since. I subsequently found out the hospital had all the info I front of them to confirm if they removed this half it would leave me with no thyroid. But no one joined the dots.
Prior to finding the lump I was hoping to get pregnant. I’m 44 now so I know age isn’t on my side.
My last t4 and TSH were only just on the outer of the scale so mot optimum. I’m on 125 micro grams But the increased dose of150 was too high.
I’ve struggled to feel well. My sleep is restless, I’m phlegmy, heartburn which I never had before and feeling like I need to take care of my gut health more than I did.
I’m wondering what alternatives people have found useful, if there’s an integrative thyroid expert out there and if people have struggled to conceive after becoming hypothyroid... I’m losing hope...
Thanks in advance x
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Jen1710
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Can you post the latest test results you have, including the reference ranges, and tell us what dose of Levo you were on at the time. If you're taking any supplements, include your latest results for vitamins and tell us what dose of supplements you're taking.
I’m taking 125micrograms of Levi thyroxine currently. I was on 200 to begin then 150. My t4 was 22 when last tested in November and TSH 0.6. In July after operation my t4 dropped to 2.0 and TSH was up at 38. Prior to the operation my t4 was 15 and TSH 1.8. I started on selenium and medicinal mushrooms in November which helped. On top of a good multi vitamin, probiotic and vitamin d I’d been taking for a while. And magnesium malate.
I recently visited a bio resonance practitioner who suggested I might need t3 which I’ve taken for four days but stopped today because I felt ill over the weekend (gut health). She also recommended pig gland but that didn’t feel right in the machine.
To be able to interpret test results we also need the reference ranges please, these vary from lab to lab so we need the ranges that come with your results to be able to understand. TSH is the only one where the range doesn't vary much, but FT4 and FT3 vary from lab to lab.
Multivitamins aren't recommended here, whether they are described as good or otherwise. They tend to have too little of anything to help low levels or deficiences and often contain the cheapest and least absorbable forms of ingredients. Also, they often contain things we need to be tested for before supplementing, eg iron, iodine, calcium, Vit D. If it contains iron then this tends to affect absorption of everything else, also iron needs to be taken 2 hours away from other supplements. We always suggest testing core nutrients and supplement where necessary.
I recently visited a bio resonance practitioner who suggested I might need t3
Best to test TSH, FT4 andFT3 altogether to know whether or not you need T3.
What vitamin supplements are you currently taking, if any
Often necessary to fine tune dose ....eg 125mcg 4 x week and 150mcg 3 x week
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Ooh thanks such helpful advice. I’m in the process of requesting more tests through hospital but they’re a bit preoccupied good to have this list Thankyou
You have my commiserations that your thyroid gland was removed without any forewarning by the medical professionals and that not one spoke with you to tell you what would happen in the future if you didn't have optimal thyroid hormone replacements.
First of all you have my sympathy that you were hoping to start a family. I am horrified that it wasn't explained to you whatsoever what to expect if thyroid gland was removed and that you would be on permanent thyroid hormones or that there could be options if not feeling well on levothyroxine.
Can I just add that a fully functioning working thyroid would be supporting you daily with trace elements of T1.T2 and calcitonin plus a measurable amount of T3 and T4 said to be at around 10 T3 + 100 T4 :
Levothyroxine is a storage hormone that needs to be converted by your body into T3 - the active hormone that the body runs, which is said to be about 4 times more powerful than T4 with the average person using about 50T3 daily, just to function.
Your body's ability to convert the T4 into T3 can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D. These may well be " in the NHS range somewhere " and not be considered for a prescription but we do need optimal levels to support the thyroid hormone conversion and you may need to supplement these yourself.
Even allowing for optimal conversion we can see from the above that you have lost your own T3 production which actually is around 20% of your overall wellbeing and overtime I'm sure this pulls you don even further.
Personally speaking I believe if there has been a medical intervention and the thyroid surgically removed or ablated with RAI and burnt out in situ, both T3 and T4 should be on the patient's prescription for if, and probably when, both these vital hormones need to be introduced to restore hormonal balance and restore the patients levels at a high enough level to give the patient their wellbeing.
The thyroid is a major gland responsible for full body synchronisation including your mental, emotional, physical, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
In the first instance we need to see current blood test results and ranges to include a TSH, T3, and T4 plus the vitamins and mineral bundle as mentioned previously then we can explain everything and give considered opinion.
If you go into Thyroid UK they are the charity who support this amazing forum and where you will read much more information on all things thyroid including the companies who offer private blood tests if your doctor isn't able to help you process these blood tests.
I'm with Graves Disease and following RAI ablation in 2005 and manage lingering Graves, thyroid eye disease and hypothyroidism.
I was refused both Natural Desiccated Thyroid and a trial of T3 through my doctor and hospital and now self source my own thyroid hormone replacement.
Both Liothyronine - synthetic T3 and NDT worked and I am now around 2 years into taking NDT which is your " pig gland " and which was used successfully used to treat hypothyroidism for over 100 years prior to the introduction of both synthetic T3 and T4.
Ooh thankyou this is really helpful. I'm just waiting to hear if I can get some more bloods done by the NHS /surgeon (following the blundered way they've approached my health). If I can't then I'll go private. My nutritionist is definitely helping. I definitely picked up when I introduced medicinal mushrooms and selenium. Thanks again it's reassuring to hear from people who've been through it and got out the other side x
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