Blood tests feeling very hypo: Hi all of you kind... - Thyroid UK

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Blood tests feeling very hypo

18 Replies

Hi all of you kind, helpful people,

I have posted several times over the last year as I came through being overmedicated in 2018. Early 2019 my doc took me off thyroid med and numbers stayed relatively in range but not optimal and still felt horrible/ hyper through 2019. Now, finally, it looks like I am going hypo again (symptoms and bloods). To say I have had a rough two years is a vast understatement. Symptoms have been horrible. Do these numbers correlate to being hypo because I sure feel hypo and in the last couple months my symptoms have changed to puffy eyes, tinnitus, gallbladder issues, woozie/lightheaded, palpitations -- if I talk too much for too long I feel woozie (I am a software trainer and have to talk non stop for an hour quite often and feel like I am not getting enough oxygen), eyebrows and hair thinning, terrible fatigue (all along), lower pulse than normal for me.

APRIL 25 BLOOD TEST

TSH: 4.38 (.5 - 4.5)

T4 Free: 1.2 (.82 - 1.77) (40% through range)

T3 Free: 3.0 (2.0 - 4.4) (41% through range)

T3 Total: 100 (71 - 180)

TPO: 11 (<30) -- (I had high TPO prior to 2019 but went gluten free and I think maybe that has kept this in range the entire last year)

B12: 634 (232 - 1245)

D: 50 (30 - 100)

Folate: 21 (>3.0

Ferritin: 60 (16 - 232)

Note, my last bloods in February were as follows (same lab, time of day, etc). My TSH has increased about 60% in 2 months and I read that if TSH changes more than 40% that indicates a real change in thyroid function and not just a fluke.

FEBRUARY 25 BLOOD TEST:

TSH: 2.75 (.5 - 4.5)

T4 Free: 1.3 (.82 - 1.77)

T3 Free: 3.1 (2.0 - 4.4)

(By the way, late in 2019 doc had me try a small dose of synthroid but specific hyper symptoms came back full force within a month so he said it was just too soon to try meds and I needed more time to get past the overmedication which can take 18 months or longer :(

I have felt so bad for so long I am beginning to accept this is the new normal, but I really don't want to give up hope. I want my life back where I can enjoy things again.

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18 Replies
greygoose profile image
greygoose

A TSH of over 4 is hypo, yes.

TPO: 11 (<30) -- (I had high TPO prior to 2019 but went gluten free and I think maybe that has kept this in range the entire last year)

By 'high' TPO, you mean over-range? If they were over-range then you have Hashi's and there's really no point in retesting antibodies after that. They fluctuate but the Hashi's doesn't go away. You still have Hashi's, and it's perfectly possible that you weren't over-medicated in 2018, you were having a Hashi's 'hyper' swing. You are now swinging back to hypo, and should be back on thyroid hormone replacement.

in reply togreygoose

Greygoose, thank you for your response you are so knowledgeable and helpful - so many of us rely on your responses.

Yes my TPO was 130+ a couple years ago. Has been less than 15 since going gluten free. So I have and will always have Hashi's. Actually glad to see my numbers taking a jump toward hypo as I have felt so bad for so long (all related to overmedication through most of 2018) that finally my thyroid is struggling and doctor is hopeful that I will be able to start meds again soon without the horrible hyper symptoms coming back.

greygoose profile image
greygoose in reply to

As I said above, you probably weren't over-medicated at all, but having a Hashi's 'hyper' swing. :)

bessygo profile image
bessygo in reply togreygoose

What is a hashi hyper swing? Is that when you feel hyper even when your numbers are in range, because one has Hashimotos?

greygoose profile image
greygoose in reply tobessygo

No, it's not that at all.

Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

thyroiduk.org.uk/tuk/about_...

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

bessygo profile image
bessygo in reply togreygoose

Thank you so much for clarifying. Sorry in advance for the long post:

I've had Hashi's forever, but don't have a lot of symptoms.

The highest my anti-bodies have been are 159. Last reading was 76. I barely eat gluten (do not have Celiac disease, nor any digestion problems and had all my micronutrients tested and all vitamin levels were good, except for Iron, plus I eat all organic, no GMO, barely any meat, etc). I am 65.

The reason I asked, was I went from 2.5 mcg (yes 2.5 mcg) of T3 to 5 mcg (divided up) and I'm on 64 mcg Synthroid. The reason being for the dosage adjustment were my Free T3 and Total T3 were on the low side (see below)

These readings were with 2.5 mcg T3 and 64 mcg Synthroid.

Thyroglobulin Antibodies 3 (range Less than 1)

Thyroid Peroxidase Antibodies 76 (range Less than 1)

TSH 1.99 ( .40-4.50)

Total T4 8.0 (5.1-11.9)

Free T4 1.3 (.8-1.8)

Free T3 2.5 (2.3-4.2)

A bit low, no?

Total T3 80 (76-181)

A bit low, no?

Vitamin D, 25-OH 72 (30-100)

B12 620 (200 - 1100)

Ferritin 35 (16-288)

Total Iron 45 (45-160)

Iron Binding Capacity (TIBC) 353 (250-450)

% Saturation 13% (16-45%)

Everyone says that such a small amount of T3 wouldn't do much.

However, the initial 2.5 mcg of T3 I've been on for a year, did make a difference in my numbers, though many on this forum have said it is too small an amount to make a difference. I just think my body is very sensitive to any medication.

My vitamins were all good, except for low Iron and lowish Ferritin, even with supplement 15 mg of Iron a day, and 18 mg of Iron every other day. Will be getting full blood work for Iron next month.

I fasted prior to my labs according to instructions on this forum, did not take either my Synthroid nor T3 though I usually take my T3 at 6 a.m. so it was probably barely in my system.

However, someone said I should pay more attention to my body than my numbers.

Since being on 5 mcg of T3 for the past 3 weeks, my body temperature isn't so low, I don't have the chills as much, and I've lost a couple of pounds though I'm not overweight and barely have an appetite anyways. I try to stay as active as possible.

But out of the list of "hyper" symptoms, the following seem more pronounced than usual: my heart rate is a bit more rapid, my hair is fine, soft and I have frontal hair loss (been like that for years), my insomnia is as bad as ever (has always been very bad...I have psychophysiological insomnia) moodiness, nervousness, high anxiety. All my "hyper" symptoms I've always had, they just seem more pronounced.

But I don't know if it's from the 2.5 mcg increase in T3 or just the mental fall out from being alone all the time with this Covid19 situation, losing my vision (I live in the US which is in free fall with the protests, racism, horrible administration, etc). To be honest, I am embarrassed for America.

I was going to continue with the 5 mcg T3 for another 4 wks and get another blood lab to see if my T3 levels improve, but then I'm thinking, maybe I should just stay on the 2.5 mcg to see if my anxiety symptoms lessen a bit.

Sorry for the long post. I'm desperate to get sleep and not feel high anxiety all the time. I'm going to try and take my Synthroid and T3 at 6 a.m. I've been taking my Synthroid between 2-4 am when I have my insomnia attacks and then I take my T3 at 6 a.m. Maybe switching my Synthroid to the a.m. will help a bit, but then I have to wait a couple of hours to have my capuccino.

Any feedback/advice, is always appreciated.

Peace out and stay safe.

greygoose profile image
greygoose in reply tobessygo

Well, I'm on the side of those that say 2.5 mcg T3 is too low a dose. Yes, it might do some good - better than nothing, perhaps - but you are still hypo. And those symptoms of yours are not 'hyper' symptoms at all. They're hypo symptoms. So many symptoms can be both, which is why we need labs as a back-up. And, your labs are saying you're still hypo with that low FT3. For goodness sakes, don't go back to 2.5 mcg. Stick it out with the 5 mcg - and you'll probably need another increase on top when you get used to it.

Having said that, if I understood correctly, which I'm not sure I did, you either left too long a gap between your last dose of T3 and the blood draw. Or, you left far too long. So, either way, those results aren't even reliable. The best thing to do is leave a gap of 8 - 12 hours between the last dose of T3 and the blood draw, and 24 hours for levo (Synthroid). Also, have the blood draw early in the morning - before 9 am - and fast over-night.

If you want further opinions on your iron, copy and paste this into a new question, so that more people will see it. :)

bessygo profile image
bessygo in reply togreygoose

I usually take my T3 at 6am. I had my blood drawn at

7:30 am. I didn't take my T3 till AFTER the labs were done. So, if I am correctly understanding you, there was too much of a gap ? Over 24 hrs. That the T3 might not have even been in my system? What time should I take my T3 for a 7:30am draw? Thank you so much for all your feedback.

bessygo profile image
bessygo in reply togreygoose

Actually, let me stand corrected. I looked up my records and I took my T3 at 2 am for a 7:30 am draw, so those T3 results were accurate. And I didn't take my Synthroid until after the draw (I usually take at 3-4 am but didn't).

What would your advice be about perhaps instead of dividing the 5 mcg T3, I should maybe take the whole thing at 6 am?

I really really appreciate your feedback.

greygoose profile image
greygoose in reply tobessygo

If you took your T3 at 2 am, and had the blood draw at 7.30 am, that was only 5 1/2 hours. That's not long enough, so, actually, you have a slightly false high, but given your tiny dose, that probably wouldn't make that much difference. Your level would still be too low. But, you should leave 8 to 12 hours.

bessygo profile image
bessygo in reply togreygoose

Hmm. I thought that T3 peaks in the bloodstream for up to 6 hrs. That 6 hours after the dose is the most accurate. I thought I read that somewhere in this forum.

So I should take the T3 at 10:30pm. Wow, I guess I won't be getting any sleep that night. And I should take the whole 5 mcg rather than dividing?

greygoose profile image
greygoose in reply tobessygo

Pretty sure you didn't read that on this forum. 6 hours is not the most accurate, no. You don't want test the peak, you want to test the trough.

Have you tried taking T3 at night before? If not, why do you think you won't be getting any sleep? At one point I was taking 225 mcg T3 all in one go at bedtime. And, I slept like a log. Lots of people find it improves their sleep.

I wouldn't suggest splitting 5 mcg, anyway, it's far too small a dose.

bessygo profile image
bessygo in reply togreygoose

I suppose I thought T3 revs up the metabolism, hence making one more wired/awake. I switched my synthroid from a.m. dosing to evening because I read that it may help my insomnia, but it hasn't so to make my life easier I think I'll take both the synthroid and T3 in the a.m.

Is waiting one hr after dosing sufficient if I want Expresso with milk. And then wait another 3 hours to take my calcium?

greygoose profile image
greygoose in reply tobessygo

If only it did! lol That's a doctor's fantasy, they often use that as an excuse not to prescribe it. But, I think they're confusing it with cocaine or something.

That's a difficult question about the Expresso. Some people would say yes, some would say no. But, if it were affecting the absorption of your thyroid hormone, that would show up on your blood tests, and - presumably - your dose would be adjusted to accommodate it. I suppose you have an Expresso every morning? But, you would need to leave 4 hours total before taking calcium supplements.

Why are you taking calcium supplements, by the way? Not a good thing to take if you can possibly avoid them.

bessygo profile image
bessygo in reply togreygoose

I have taken calcium for years . No problem. Just to supplement for osteoporosis which was brought on partially by Synthroid. Have been osteopenia to normal since taking Prolia without any problems. No side effects. I'm one of the lucky ones with Prolia. Calcium levels in blood are good. Do squats, walk a lot, lots of resistance exercises, etc. No pain.

My Endo Dr was concerned about my anxiety and rapid heartbeat when she initially prescribed the T3 for me last year instead of upping my Synthroid since I believed there was a conversion problem so why take more Synthroid?

I guess everyone reacts differently to meds. I'd been on 50 mcg of Synthyroid for years until I needed the adjustment last year. And I've read that coffee and milk can both effect absorption. Fool that I was when younger, I took my Synthroid in the a.m. and then a Tums (I know, the worse, but I didn't know anything) for calcium and then coffee and milk! Yet my levels were okay and I had no hypo symptoms. I never even knew I had Hashimotos till a few years ago and adjusted all my supplements. I take a special reacted calcium from a functional Dr now. It's tiring being one's own guinea pig. Wish I could just take the pills and not worry when to eat, etc. I'm lucky I don't have horrible symptoms. Just wish my hair wasn't so thin. But that's from another autoimmune problem. Frontal alopecia. Hereditary. Can't get my ferritin levels up. Hence, the iron supplements (also very good liquid iron from Functional Dr.) since I rarely eat red meat and most of my iron comes from veggies, fish, etc. Thanks for all your advice. Stay safe.

greygoose profile image
greygoose in reply tobessygo

I have taken calcium for years . No problem.

I would argue that you won't know there's a problem until you actually have one - like kidney stones, or a heart attack - where the calcium has built up in the soft tissues. Calcium is not a treatment/cure for osteoporosis. Other nutrients, like magnesium are far more important for bones - and good levels of thyroid hormones.

which was brought on partially by Synthroid.

I would also argue that Synthroid does not cause osteoporosis. Why do you think it caused yours?

My Endo Dr was concerned about my anxiety and rapid heartbeat when she initially prescribed the T3 for me last year instead of upping my Synthroid since I believed there was a conversion problem so why take more Synthroid?

Ummm… You've totally confused me, now. Who suggested you should take more Synthroid? But, anxiety and rapid heartbeat could be under-medicated symptoms, as well as over-medicated. Could also be low iron causing rapid heartbeat. It could also be causing your hair-loss.

I've read that coffee and milk can both effect absorption

Indeed they can. If you take them too close to your thyroid hormone. But, one hour should be fine.

:)

bessygo profile image
bessygo in reply togreygoose

My previous labs before I started T3, my TSH was higher than it had ever been, the discussion with my Dr was to up my Synthroid from 50 mcg to 75 mcg.

But my T3 was still low. So I asked for the T3. She dosed me low at 2.5 mcg, and reduced my Synthroid to 64 mcg. That's what I have been on when I started feeling chills at times, my body temp was low in the a.m. and though I wasn't eating a lot but working out, my weight would not budge. So now I'm on 5 mcg T3.

As far as iron, that's why I'm supplementing iron and getting a full iron lab. I thought straightening out my thyroid meds would help since I have low saturation and low iron but still in range. My regular Dr is giving me a full iron blood lab.

As far as.calcium,.etc.

I also take high-quality magnesium, d and k along with calcium. here's just 3 different different sites all saying the same thing. My calcium, d and magnesium blood levels are all good.

As far as bone loss and use of thyroid meds for many years here's just a few studies, articles:

"The prestigious British Medical Journal published a case controlled study in 2011 involving over 213,000 participants over the age of 70 with 88% of the participants women. This study clearly showed that 10.4% of those taking levothyroxine experienced a fracture within 4 years of using the properly prescribed dose. Higher prescription doses resulted in higher occurrence of fractures.

An extended retrospective research study in the United Kingdom was performed with over 23,000 patients. Those who used levothyroxine showed an increase in fractures of the femur bone, the strongest bone of the body. The risk was not extensive, but still present. The unusual finding was that it occurred more in men than women. This was presumably due to the protective effects of estrogen in women. This study did not focus on other sites of fracture common with osteoporosis, including wrist or spinal compression fractures. It did not delve into how many individuals had developed bone loss - only fractures.

Another study focused on 194 women who took the thyroid hormone for more than 20 years. Women had significantly lower bone mineral density in forearm, hip, and low back than those who did not take levothyroxine. Other studies refute the association of osteoporosis and thyroid medications. The fact remains that the drug manufacturer of Synthroid clearly shows bone loss as an adverse effect.

There are many other drugs that cause osteoporosis as an adverse effect. Many of these drugs are in the top 10 best selling or top 10 most prescribed drugs. Most are in the top 100 prescribed drugs. These drugs include:

• Thyroid hormone replacements: Levothyroxine, Synthroid, Cytomel, etc.

The research generally shows that the longer the individuals are on these medications, the higher the risk. The onset of

The elephant is in the room regarding drug induced bone loss. If you have to use medications that have these adverse effects, try to use the lowest dose possible, for the shortest amount of time and with least amount of prescriptions. Combining natural support with medical support may help support this goal. Consider using nutritional support to help support thyroid activity or other needs. There are many resources to be found and utilized. Don’t get lulled into complacency with risky drugs. Read the fine print and be proactive today

"Hypothyroidism itself produces an increase in bone loss, and if the disease is treated early, this can be minimized. In the same manner, excessive amounts of thyroid hormone replacement can result in bone loss. For this reason, it is important that patients on thyroid hormone replacement be checked regularly ( every 6-12 months) to make certain that the dose of replacement results in a TSH within a normal range. The only exception to this rule is when treating patients on replacement after their thyroid is removed or destroyed secondary to cancer. In these cases, the amount of replacement given is greater, and results in a suppression of TSH. If you have concerns about your bone density, you should speak with your physician about ways to assess your bone mass (a bone density test). In addition, you should seek out information on ways to maintain healthy bones such as calcium supplementation and weight bearing exercises. If your bone density is actually low, there are many therapies out there to treat osteoporosis. "

"Levothyroxine is the most commonly prescribed drug in our nation and it poses a hazard for bones. Prescription medications that contain thyroxine such as Levothyroxine, Synthroid, etc. or thyroid hormone replacement drugs are linked with bone loss and osteoporosis. Unfortunately, many times the consumer is unaware of this long term outcome. Too much thyroid medication or poor management of the medication can cause increased bone loss and risk for fracture. The development of osteoporosis can occur with using thyroid hormones for several years. This is a risk for most consumers who are put on Synthroid or other thyroid meds for life"

greygoose profile image
greygoose in reply tobessygo

Well, I think that all your problems are down to under-medication. You have a lot of hypos symptoms - including weight-gain and not being able to lose it. And, increasing your T3 by just 2.5 mcg T3 is not going to make much difference.

here's just 3 different different sites all saying the same thing.

Did you mean to put some links in, there?

Taking vit D will increase your absorption of calcium from food.

As for these studies in bone loss, etc. they don't make much sense. Levo isn't a drug, it's a hormone. Hormones occur naturally in the body and you can't live with out them. Synthetic levo is exactly the same chemical structure as the T4 made by your thyroid. So, why would one cause bone-loss and the other not? But, if you want opinions from people more knowledgeable than I, I suggest you post your own question and ask people like helvella and diogenes.

My apologies to Hidden for hijacking her thread. :)

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