Need a little hope

I'm 8 months post total thyroidectomy because of cancer. I've had many thyroid labs in my life and all were normal. I've been super blessed to have not experienced any health problems for my age, and didn't even have hypo symtems when diagnosed. I had RAI 1 month after surgery and have been miserable ever since. My endo only treats with levothyroxin and up to 224 mcg and feel worse every week. I'm seeing new endo in 8 weeks but really scared what condition I will be in by then. My brain fog, attention span, memory, and pain in my bones are about to where I'm not able to perform my duties at work.

I'm just wondering if all the symptoms go away once you're treated properly, or do they stick with you? I saw a picture of myself a couple of days ago and burst out crying because I didn't even recognize that face 😥😥😥

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16 Replies

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  • Have you got copies of your results (including ranges - figures in brackets)

    Ideally you need TSH, FT4, FT3, TT4 as well as antibodies. RT3 might be useful too, it's more expensive, but as you are on high dose and feel worse with each increase you might have high RT3

    If you read posts on here you will realise that also important to have very good levels of vitamin D, folate, ferritin & B12.

    Very unlikely to get all these tests, even from an endo. You can like many of choose to get your own private blood tests done

    thyroiduk.org.uk/tuk/testin...

    Always do any thyroid test as early as possible in morning, fasting (but can drink plenty of water to keep hydrated) and don't take Levo in 24 hours before. Take it immediately after

    Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early on waking, but quite a lot of us find bedtime more convenient and possibly more effective too.

    As you have had all thyroid removed, you may well need to add small amount of T3 to the T4.

    You can email Louise at Thyroid UK for list of Thyroid friendly doctors.

    louise.roberts@thyroiduk.org.uk

  • TSH 42.777

    0.450-4.500

    Thyroxine (T4) 4.2

    4.5-12.0

    T3 uptake 26%

    24-39%

    Free Thyroxine index 1.1

    1.2-4.9

    Thyroxine (T4) free, direct, S T4, free (direct) 0.69 ng

    0.82-1.77 ng

    Triiodothyronine T3 59ng

    72-180 ng

    Vit D 34

    30-100

    Vit B12 725pg

    211-946

    Ferritin. 74ng

    10-244 ng

    Folate 15ng

    7.0-20.0ng

  • I have appt with new endo in 8 weeks 😏

  • Your TSH is over 42!!!! It looks as though you are very very undermedicated. It's not suprising you feel dreadful;. It look s though you are not absorbng your meds and or not converting T4 to T3 well. But it's hard to tell as there's no free T3 result. Free T4 is under range. Are you taking your levo on an empty stomach and eating and drinking nothing but water for 1 hour?

    Your vit D is also very low, so you need to supplement and also take K2 and magnesium. Folate, ferritin and B12 are OK

  • Is the TSH really 42? Obviously far too high.

    Your FT3 ( triithyronine ) is below range. So is your FT4

    Are you always taking Levo on empty stomach? Nothing but water for an hour after.

    Do you have any gut issues? Your taking a relatively high dose, perhaps not absorbing.

    What does your endo suggest?

    Your vitamin D is also very low. We need it above 70 nml/L (UK measurement - USA has different units) . If you are supplementing already increase the dose. Lots of us take about 5000iu daily for 2-3 months to get dose up. Then test to see where you are. Increase or decrease as required.

  • These labs were on 2/22/17 and at same appt he increased my dose from 175mcg to 224mcg. Would that dose increase make the FSH 42 even higher or bring it down?

    I have history of guy issues so I take 40mg of omeprozole a day, so I take my thyroxin at 3:00am and omeprozole at 8:00 am. Then calcium mid day and iron mid afternoon.

  • ok on the vit D, I'm currently taking 1600 a day

  • Unless tests revealed low calcium, generally no need to supplement. Improving vitamin D levels increases calcium levels.

    In fact most of us taking high dose of vitamin D also take vitamin K2 to direct that extra calcium into bones rather than clog up arteries

  • That won't really maintain your current low level during the winter. I'd up it to 5000iu for a few weeks then retest.

  • Ah, the PPIs will be preventing you from absorbing your meds as it destroys the stomach acid you need. Any chance you can wean off omeprozole and change ? It's very hard to get off as you have rebound acid production (and it was designed to be used short term only). Do you KNOW you have too much stomach acid? Most hypo people have too little, which gives similar symtoms to too little. Do you know that you need calcium? Most people need magnesium rather than calcium.

  • A high TSH is indicative of hypothyroidism - either untreated or under-treated.

    A very low TSH is indicative of hyperthyroidism.

    In order to feel well you need to take enough levothyroxine (or other hormones like T3 or NDT) to get your TSH down to 1 or under. Some people even need enough to get it under the reference range.

    You are on a high dose of Levo but you seem to not be absorbing it. Your body is not making use of it. There can be lots of reasons why this might be the case.

    SlowDragon has given the conditions for taking Levo to get best absorption in her earlier post.

    However, even if you follow those suggestions some people still don't do well.

    1) You might not be absorbing the Levo (T4). Do you take lots of antacids? Or do you take PPIs like Omeprazole or Lansoprazole? They may be sold under the brand names Prilosec or Nexium or Losec. People are often prescribed PPIs for gastro-esophageal reflux disease (GERD). For most people they are the worst thing they can take. GERD is usually caused by too low stomach acid, not too much. If that doesn't make sense to you, and is relevant to you, then I can give you links to explain it.

    2) There are lots of brands of Levo available. Assuming you are from the USA, you have a fair number of choices - about 6 or 8 I believe. Synthroid is the one that many people want but it is no better than any of the others - it just has a bigger advertising budget. helvella knows more about USA Levothyroxine brands than I do. If you don't get on well with one brand then try another one. They all have the same active ingredient, but they don't all have the same fillers. And it may be the fillers which are preventing you from absorbing the Levo.

    3) You might not be able to absorb levothyroxine at all. Some people do better with NDT = Natural Desiccated Thyroid. It was the thing that hypothyroidism was treated with before Levothyroxine was invented. NDT has the active ingredients T4 and T3, which are derived from animal thyroids - I think USA brands of NDT are always made from pig thyroid. There are several brands that people in the USA may be familiar with - Armour Thyroid, Naturethroid, WP Thyroid, NP Thyroid. I'm not sure if there are any others. Erfa is distributed across Canada. Some people in the USA may buy thyroid products made outside North America (Thailand sells three products), but I'm not sure of the legality of importing Thai NDT into the USA.

    4) There is another option - T3. It can be taken alone or it can be taken in combination with levo. T4 is a storage hormone. It has no activity of its own. In order to do anything useful in the body it has to be converted into T3 which is the active hormone.

  • It might be that your new dose has adequately brought down your tsh although symptoms may suggest otherwise but you need to check your blood test results to get a clearer picture as you may have even gone hyper since then which causes similar symptoms in myself. If your next bloods come back as still hypo, then there's possibly something going on with your stomach/absorption so needs to be resolved. I think maybe have a look into why you are having gut issues in the first place to need the meds.

    Also still Vit D deficient and need a higher dose. How long have you been on the Vit D supplements and are these capsules - these also might not be working optimally if you have absorption issues so maybe find a sublingual one if levels haven't improved?

    I used to have stomach issues but found I could absorb T3 better for some reason. If you wanted to go the T3 only route , from my personal experience, I would disagree with T3 only as being okay for those without thyroids as I have had a few issues with this recently since my body stopped making it's own T4 so have now had to go back and add T4.

    Hope you get it resolved soon and start to feel better :-)

  • Thank you both for all of the information. I'm grateful 🌷

  • Don't miss the fact that your surgery (if they used nitrous oxide anaesthetic) and omeprazole could have seriously affected your vitamin B12 level.

    Low B12 has lots and lots of symptoms - many of which are easily cinfused with those of low thyroid hormone levels.

    I'd like to know your TSH had also been measured at a different lab - one that uses different measuring technology. This is to exclude interference which can cause falsely raised levels to be reported.

  • Omeprazole also lowers magnesium, which works along side vitamin D as a co-factor

    gov.uk/drug-safety-update/p...

    Lots of posts here about taking magnesium as well as vitamin D.

    B12 lowered by PPI's too

    pulsetoday.co.uk/clinical/m...

    You can not just stop taking any PPI, it has to be withdrawn slowly & carefully & alternative treatments used instead

    You can test to see if you have high or low acid. As others have suggested it's quite likely low acid.

    Lots of posts on here about how to treat low acid as it's a common hypo side effect

    Low acid could be hindering absorption of Levo

    Many of us here take vitamin B complex & B12 as gut function is comprised by Thyroid

    Vitamin D - here in UK we can get mouth spray by Better You. Avoids poor gut absorption issue

    I guess you are in USA. Not sure if sublingual vitamin D available there

  • Look for bio D Mulsion forte - oil based drops

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