HELP!..Hypo or Hyper: Hello! I am 56.year old... - Thyroid UK

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HELP!..Hypo or Hyper

LAW5 profile image
LAW5
38 Replies

Hello! I am 56.year old female.been Hashimotos and hypo for 17 years. Have been difficult to balance so on T4 ALONE AND T3 & T4...in fluctuating doses.

Also suffer from M.E/CFS for 22 years. Currently finished periods 18 months ago so in menopause I suppose.

Recent blood results (UK) TAKEN WITHOUT TAKING MEDS THAT DAY

FREE T4 (thyroxine) 16.2 (normal range 12-22)

FREE T3 (Triiodothronine) 4.8 ( normal range 3.1-6.8)

THS 0.07 (normal range 0.27-4.2)

CRRENT MEDICATION DAIL

100 MGS T4

12.5 MGS T3

Registrar obsessed with my THS being too low so considered hyper by him.

In last week or more been loosing lots of hair and gone greasy and dry and LANK, skin differences;; feeling toxic; very easily emotional and emotional labike; low; depressed; backs of eyes very red according to opticia: aching; either low oral temperature or mild fever (most of which can cross over with M.E)...

Resting pulse rate between 65-74

No constipation

Any informed opinions about whether I'm hyper on hypo making me feel so awful. Or even just menopause.

I reduced the T3 down to just 6mgs per day last and could barely put one foot in front of other.

Increase it by just a bit and considered to be over.

Fully aware of useless end is and THS obsessions but feeling so fatigued...over sensitive...emotional Tec something has to be up.

Please please help if any of you can.

Have been truly HYPER TWICE in 17 years....really unpleasant and went on anti anxiety anti depressants which have been on 11 years. I was on 225 of T4 and T3 at one stage.

Advice greatly received. Thank you x

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LAW5
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38 Replies
greygoose profile image
greygoose

Unless you have Grave's at the same time as Hashi's, you cannot be hyper. You are basically hypo with Hashi's, with occasional hyper-like swings. But, if that were the case, you would have FT4 and FT3 well over-range - something like FT4 30 and FT3 12. That is not your case. You have a low TSH but that is because you are taking T3, and the pituitary considers that as you are taking T3, you no-longer need the TSH, so has stopped producing it. All perfectly natural, and if your doctor knew anything about thyroid, he would know that.

You're not even over-medicated, because your FT3 is only mid-range - just a tad under, to be strictly correct. And, it's the FT3 that is the most important number - especially when you are taking T3. And, your doctor should know that. He is extremely ignorant.

I would actually say that you are under-medicated, and that's why you don't feel well. Most hypos need their FT3 higher than yours. And, if those were my results, I would want my T3 increased. :)

LAW5 profile image
LAW5 in reply togreygoose

Thank you so much for taking the time out to reply. All much appreciated. I went hyper twice when over replaced with meds...total insomnia...severe panic anxiety huge weight loss etc.

I feel very toxic though and (apologies for personal info)- go to the loo twice a day so no problem there...but suddenly loosing hair and skin and aching and painful joints...terrible fatigue and over emotional as listed above. Do you think these are hypo not also possibly hyper systmptoms?

I had terrible back and hip and was taking lots of painkillers and anti inflammatories for 3 weeks so made me feel worse but stopped them 2 weeks ago...maybe that could have affected thyroid function ? Thank you

greygoose profile image
greygoose in reply toLAW5

No, you didn't 'go hyper', not technically. That's a physical impossibility. Perhaps you were over-medicated, or maybe you had a Hashi's 'hyper' swing, but you did not 'go hyper'.

When you have Hashi's, it's possible to have hypo and hyper symptoms at the same time. But, an awful lot of symptoms can be due to both hypothyroidism and hyperthyroidism, so we cannot rely entirely on symptoms. We need blood tests, too. And your blood tests say that you are under-medicated. Plus, on the dose you're taking, I doubt you have much thyroid function, anyway, so the pain killers wouldn't have made that much difference to your results. :)

LAW5 profile image
LAW5 in reply togreygoose

Yes over medicated then you're right. I'm listening to you thinking I may be under medicated. Maybe I should suggest a 1/4 tabletvof T3 early afternoon to see if I improve. Cannot bare this toxic feeling...Thank you so much for your help. May I ask are you thyroid treated too?

ShootingStars profile image
ShootingStars in reply toLAW5

I calculated of your levels as being much too low in the range. Too low in the range and you get symptoms, just like if you're too high in the range, you get symptoms.

Right now neither your FT3 nor FT4 are anywhere near optimal levels. Both are much too low. Your FT4 to be much too low and is only at 42% of range. It should be above 50% but you'd probably feel even better if it was 65-75%, but if you get much over 75% you'd probably feel over medicated. Your FT3 is slightly better than your FT4, but it is only 46%. It should be in the same approximate percentages of range as your FT4. Same applies for FT3: if it's too low in range (under 50%) you'll have increased symptoms, just as if you get too high in the range, you'll also have increased symptoms.

You are converting T4 into T3 fairly well. Taking T3 is what suppresses your TSH. No, you do not want to take more T3, you want to take more T4. If you take more T3, your TSH will become even lower, but your FT4 will not increase much. You should increase your T4 dosage until your FT4 is up where it should be. You might need to decrease your T3 dosage or in the end possibly eliminate taking T3.

LAW5 profile image
LAW5 in reply toShootingStars

Thank you so much for responding. So kind. May I ask how youbcalculated that? I do not do at all well on T4 ALONE AND definately need to include T3 always as I don't convert properly. I'm wondering about introducing a 1/4 tablet (6mgs) of T 3 in the afternoon to see if that improves things.

I guess you are talking about being optimal as you know how end is are. They say I'm fine and need to reduce if anything.

My original THS was high upon diagnis yes

ShootingStars profile image
ShootingStars in reply toLAW5

You are very welcome. Here is the math formula with your FT4 as an example:

FREE T4 (thyroxine) 16.2 (normal range 12-22)

1) Subtract the bottom range number (12), from the top of range number (22), and arrive at a number (10). 22-12=10

2) Subtract the bottom range number (12) from your your lab result number (16.2), and arrive at a number (4.2). 16.2-12=4.2

3) Divide the number from #2 (4.2) by the number from #1 (10) and get 0.42. Move the decimal point over two places and it becomes a percentage: 42%.

Optimal is the place to be! ;-) It's where you have the least amount of symptoms and you feel great! :-) This is only possible when your levels are both optimal. If they are not, then you'll have more symptoms. Right now, you are far from optimal and that's part of why you feel the way you do. The other part could be D3, B12, folate, rbc magnesium levels, and iron levels.

You don't want to add any more T3. You want to add more T4. Add more T4 and you have more to convert into T3, and then both your FT3 and your FT3 will both increase.

I completely understand not wanting to stop taking T3. I don't think that you necessarily need to stop, but you don't want to take any more than you currently are because your TSH will be even lower, but your FT4 will not get higher unless you add more T4. Your TSH should not be any lower than it is, and that's what would happen if you just add more T3.

Your doctors are confused. No, you don't need to decrease meds, you need to INCREASE T4, and then possibly decrease T3 (this will depend upon your lab results). Your doctors are not understanding that your thyroid hormones are too low, and this is causing your symptoms. This is a common misconception for some doctors to ignore thyroid hormones levels because many have it stuck in their head to only focus on TSH. TSH is not a thyroid hormone, so it's not what's causing your symptoms. It's your low thyroid hormone levels that are causing your symptoms.

Is there any chance that in the last 17 years since you've been on meds you've had a car accident or other accident?

Steni profile image
Steni in reply toShootingStars

You are AMAZING - can’t believe how much you know . Trying my best to understand and relate to my own situation but failing miserably of course 😂

Angel_of_the_North profile image
Angel_of_the_North in reply toLAW5

You don't need to do the maths. Just go here and enter the test results. Not in English, but pretty obvious what to type where: chorobytarczycy.eu/kalkulator

greygoose profile image
greygoose in reply toShootingStars

ShootingStars, how do you know she's converting 'fairly well' when she's taking T3? It's impossible to know. Have you seen labs from when she was on T4 only?

greygoose profile image
greygoose in reply toLAW5

Are you splitting your dose of 12.5 T3? Have you tried taking it all in one go? It's not always a good idea to split a small dose.

I've been hypo/Hashi's most of my life, but was only diagnosed at the age of 55 - I'm now 73. I take T3 only, and have done for several years. :)

LAW5 profile image
LAW5 in reply togreygoose

P.s I had those bloods taken on a no meds morning as read its better and more reliable than having taken meds...is this right?

greygoose profile image
greygoose in reply toLAW5

Yes, that's right. if you take your 'meds' before the blood draw, all you will be testing is the dose you just took. As you are taking both T4 and T3, that would skew both FT4 and FT3 results. Take your thyroid hormone after the blood draw.

TSH depends more on the time of the blood draw. TSH is highest early in the morning, and drops throughout the day. So, as all most doctors look at is the TSH, it's best to have the blood draw as early in the morning as possible, after fasting over-night. :)

LAW5 profile image
LAW5 in reply togreygoose

Thank you. Amazing but I guess not surprising that I've never been advised to avoid taking them before bloods...

greygoose profile image
greygoose in reply toLAW5

What is amazing is that doctors don't know enough to tell you not to take it! But most of them don't know the difference between a hormone and an aspirin. :(

SlowDragon profile image
SlowDragonAdministrator

You also need vitamin D, folate, B12 and ferritin tested

Extremely common to have low vitamin levels and they need to be optimal for T3 or T4 work well

Are you on strictly gluten free diet? Or tried it?

Many people with Hashimoto's find it helps or is essential

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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Some of us need to take small dose of T3 every 8 hours (3 doses per day)

LAW5 profile image
LAW5 in reply toSlowDragon

Thank you very much for taking time to reply and thank you for ypur info. 've never gone gluten free as been on replacement meds for 17 years.

Been tested for celiac but don't have it.

On Vit D and B complex. Occasionally take extra liquid iron.

From my symptoms and blood results do you think I'm leaning towards hypo or hyper? Feeling very toxic with pain in joints. Very over emotional and vulnerable. Going to the loo no problem every day so not constipated

Had to take painkillers and and antinflammatiores for 2-3 weeks but stopped 2 weeks ago. Wondering if they could have caused these symptoms delayed?

Angel_of_the_North profile image
Angel_of_the_North in reply toLAW5

You are hypo. No doubt about it. And I would expect a higher free T3 in someone taking T3, so I suspect you are not converting well.

SlowDragon profile image
SlowDragonAdministrator in reply toLAW5

Majority of us with Hashimoto's are not coeliac but about 80% find absolutely strictly gluten free diet can help, sometimes significantly

You won't know unless you try it

LAW5 profile image
LAW5 in reply toSlowDragon

P.s I had these last bloods done without taking meds that morning as read it was more reliable as based on storage rather than meds in system that morning...do you know if that is right?

Angel_of_the_North profile image
Angel_of_the_North in reply toLAW5

Generally it's advised to leave 24 hours between Levo and test, and 12 hours for T3

ShootingStars profile image
ShootingStars

Hi LAWS. Do you recall what your TSH was when you were diagnosed? Through your 17 years of meds, was your TSH ever very high, or was it mainly on the low side. With very suppressed TSH but also slightly lowish FT3 and FT4 (normally very low TSH goes along with optimal to too high FT3 and FT4), this looks a lot like you could possibly have Central Hypothyroidism. This happens when your pituitary gland or hypothalamus do not function normally. The pituitary normally tells the thyroid (via TSH levels) how much thyroid hormone to produce. With Central Hypothyroidism, the pituitary gland thinks that thyroid is producing enough thyroid hormone, so it doesn't ask for more. In reality, the thyroid is not producing enough hormones and thyroid hormone levels are on the low side.

You could also have Hashimoto's along with Central Hypothyroidism. Have you had your two thyroid antibodies tested, TPO/ab and TG/ab? If you've only had one tested and it was negative, the other could still be positive and you'd have Hashimoto's.

Treatment for central hypothyroidism is the same as standard hypothyroidism: replacement thyroid hormones. The very suppressed TSH with throw of your average or less than average doctor, since they mistakenly focus on only TSH levels, and forget the actual thyroid hormone levels, Free T3 and Free T4.

satu55555 profile image
satu55555

I agree with Greygoose's first reply here. I would also add that to recover from CFS you need to work together with a functional medical doctor - a very good one and a naturopath. I went through CFS and have recovered, but I would never have found the way through it with conventional doctors who have no idea of how to treat it. It's not about treating CFS, it's about treating everything that's gone wrong in the body, especially hormonally but also in every other way. I had also hashimoto's (not a very bad one) and have no antibodies due to diet. So from my experience I recommend functional medical doctor and a naturopath - very good ones. I cannot give recommendations in other countries as I live in Scandinavia.

FancyPants54 profile image
FancyPants54 in reply tosatu55555

Sadly functional doctors and naturopaths are like hen's teeth in the UK. They more or less don't exist.

satu55555 profile image
satu55555 in reply toFancyPants54

I'm sad to hear that. There are multiple ones in the US and around Europe who do appointments via Skype.

Hashihouseman profile image
Hashihouseman

No one should say you are over or under without a great deal more data linked to symptoms and physiological signs. One can conjure seemingly rational arguments for you being over or under in relation to standard lab ranges and received wisdom on dosing but the true optimum, your homeostatic set point is really something only you could discover by a great deal of data collection aligned to a detailed signs and symptoms diary. One persons set point for euthyroid state (treated or healthy) can be very different to anothers and somewhere in lab ranges can be way off... it isnt natural to suppress TSH and unless there is overwhelming clinical reason we should probably allow a more natural pattern of TSH since this hormone is not just responsible for thyroid gland signaling, it also works in the biofeedback mechanisms for wider thyroid metabolism. In the absence of clear indications of your own unique set points i venture to suggest you aim for what is most common in healthy euthyroid populations where about 20% of T3 comes from the thyroid gland ( if that source is compromised it is logical and rational to replace it, but probably no more!). Roughly and variably according to size and other individual factors T3 relacement at 7-9 mcg is probably the optimum, the rest should come from diodinisation of T4 and so we need enough T4 to deliver it and to allow the nuances and subtleties of our biofeedback mechanisms to operate as if we were euthyroid. If I were you Id reduce T3 a little and raise T4.... Different tissues metabolise and feedback T4 and T3 in different ways and either too much or too little T4 and or too much or too little exogenous T3 could disturb this so much we lose our way and symptoms become confused causing us doubts whether we are over or under medicated. Personally i find it it incredibly useful to have tests of total and free T4 and T3 done simultaneously because then you can gauge the proprtionate contributions of exogenous and endogenous T3 and the ratio between total T3 and T4.... of course a decent helpful properly diagnostic endocrinologist should be supervising all this stuff!

cgauthie profile image
cgauthie

Sorry to hear you are having more challenges. I would ask to have you antibodies checked for thyroglobulin and TPO. That will tell of you are hyper or hypo. I turned my hyper around in one year by completely eliminating gluten and dairy. I have been on no meds since August. Free t3 and free t4 Thyroid results are normal and stable. Thyroglobulin antibodies are still

Coming down and almost normal(takes long time to regulate). Just some suggestions. Good luck.

thyroidrose profile image
thyroidrose

It is so hard to know what the heck is going on sometimes. If you’re like me your hypo and hyper symptoms can be very similar making it even more troublesome to distinguish. But last year I added too much T3 and my results were nearly identical to yours, and I was hyper. my free numbers were all still in range but my TSH was very low, 0.016. I backed down off of some meds (advises by my endocrinologist) and it took a while but things leveled back out. It takes a few weeks though and you might feel worse before you feel better. Bottom line I would guess you are hyper. I’m not a doctor obviously but as someone who has been there lab-wise it’s possible. We are all so different and what optimal is for one person doesn’t necessarily suit the next.

Joesmum profile image
Joesmum

Please don’t underestimate how awful lack of estrogen can make you feel.

Greasy hair, dry ends and lank are CLASSIC menopause symptoms. You may be post menopausal but the lack of estrogen ( for some women) can make you feel desperate and I’m not talking about the odd hot flush! I’m talking mind boggling fatigue, anxiety, depression, loss of hair, greasy hair, dry skin, fainting, reclusive behaviour, aching all over the body, painful feet, painful joints, even becoming bed bound.....the list goes on and it is confusingly similar to hypothyroidism.

I have replaced both thyroxine and estrogen for a long time as I am hypopituitary and figuring out which symptom is being caused by the lack of which hormone - thyroxine or estrogen - is a mine field......even for the endocrinologists.

FancyPants54 profile image
FancyPants54 in reply toJoesmum

Bang on Joesmum! A lot of what LAW5 is feeling could well be lack of oestrogen. Our oestrogen levels keep dropping lower and lower for quite a long time after our last period. Sometimes for years. And it makes some women feel suicidal. I've had a handful of hot flushes but the other symptoms are terrible.

Joesmum profile image
Joesmum in reply toFancyPants54

Thanks FancyPants.

I’ve mentioned this a number of times on this forum.

Women with dodgy thyroids tend to have a very bad time with the menopause....so says my endo.

If the thyroid blood levels look good and the folate, iron, b12 etc are in a good place...... then the menopause AND post menopause should be a real consideration. The symptoms can be Horrific, particularly the fatigue and mental effects.

Of course there will always be those who “sailed” through with nothing more than the odd flush but it’s a very, very real issue for many women and as I said with symptoms that completely mirror hypothyroidism.

Tingling tongue, asthma, dead arms and legs, poor vision, insomnia, nausea, thirst.....the list just goes on.

As soon as my hair goes greasy......I know I need more estrogen.

Hafenfeld profile image
Hafenfeld

How are your adrenal glands? Adrenal fatigue or insufficientcy is usually always involved with CFS, thyroid issues etc. etc. it sounds as if you are bouncing all over the place and extremely unsettled. Maybe find a good holistic practitioner to help guide you. Have them check for nutritional deficiencies. Simple blood test. GP’s don’t usually look there.

FancyPants54 profile image
FancyPants54

A lot of the symptoms you are describing could well be menopause, caused by low levels of oestrogen. If I were you I would ask your GP to test your levels and if low, start on some HRT because it could be that not your thyroid that's making you ache and loose hair and feel very emotional.

TSH110 profile image
TSH110

You are hypo! Free T3 is not over range it is not high enough it needs to be in top 1/3 and that is what matters not the TSH. You are not optimised which is why you have symptoms you need more medication not less. You cannot be induced into hyperthyroidism by medication anyway. Why don’t these GPs get it? It is a very common condition they really ought to be up to the mark in it but some appear to understand nothing about optimising medication or how to interpret blood results correctly.

whyz68 profile image
whyz68

Look into HPA axis dysfunction. It is what people with CFS and PTSD have; and I'm not saying you have PTSD. The hypothalamic-pituitary-adrenal axis really includes the the thyroid and should be called the HPAT axis. Disregulation/dysfunction of the HPA axis is complicated all on its own but throw in menopause and you're adding another hurdle. I wish I could tell you how to fix it but I haven't been able to fix myself and it has taken me 4 months of daily research to figure out what was wrong with me. In my research I stumbled on an article that claimed estradiol helps with cell receptivity/absorption of thyroid hormone and that a lot of women become hypothyroid when they go through menopause. What does that mean if you're already hypothyroid I don't know. Thyroid panels only work for people who fit "in the box" and a lot of us don't which is why we are here. T3 and T4 levels circulating in the blood that shows up in lab work doesn't tell the full story because it doesn't tell you how much your cells are taking in. Cells can up-regulate and down-regulate which will make the cells either more sensitive to thyroxine or less. Think of type 2 diabetes (insulin resistance) where the pancreas actually does make insulin but the body no longer responds to it. I wish I had simple answers for you but the reality is that for some of us we are going to continue riding the "I feel like crap" roller coaster off and on and sometimes for months or even years at a time. There really isn't any choice other than educating yourself; basically become a self-taught endocrinologist and figuring out what supplements help you the most. It would be great if there were doctors who could help but I haven't found one yet.

Aurealis profile image
Aurealis

One method I’ve tried to find out whether under or overtreated is an increase in dose. If I feel worse I’m over treated, if I feel better I was undertreated. May not help you though as we’re all different.

SilverAvocado profile image
SilverAvocado in reply toAurealis

This is a great piece of advice, I think! The only way to really know is to try it.

Aurealis profile image
Aurealis in reply toSilverAvocado

Yes but I’m not sure it’s an approach that works for everyone, I’m quite sensitive to doses changes and perhaps this isn’t the same for everyone.

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