Still comfused: Ive been on 25 levo for almost a... - Thyroid UK

Thyroid UK
109,130 members126,768 posts

Still comfused

Friend49
Friend49

Ive been on 25 levo for almost a year. I dont know if its the right dosage my doctor says its in range.lm tired achey legs blurry vision thinning hair hair doesnt grow on legs arms.could it be the levo thats causing it? Should my dosage be upped? I dont see an endo til october. Heres my results JULY2017 TSH 8.87 RANGE 0.46-4.68. FREE T4 0.74 RANGE 0.78-2.19 JAFrN2018 TSH 2.810 RANGE 0.46-4.68 FreeT4 0.97 range 0.78-2.19 may 2018 TSH 1.810 RANGE 0.46-4.68 FREET40.93 RANGE 0.78-2.19 JUNE 18 TSH 1.450 RANGE 0.46-4.68 FREE T4 0.96 RANGE 0.78-2.19 THANKS!!

28 Replies
oldestnewest

JULY2017 TSH 8.87 RANGE 0.46-4.68.

FREE T4 0.74 RANGE 0.78-2.19

2018 TSH 2.810 RANGE 0.46-4.68

FreeT4 0.97 range 0.78-2.19

may 2018 TSH 1.810 RANGE 0.46-4.68

FREE T4 0.93 RANGE 0.78-2.19

JUNE 18 TSH 1.450 RANGE 0.46-4.68

FREE T4 0.96 RANGE 0.78-2.19 THANKS!!

Hi Friend, I had to redo so I could figure the timeline. You should have had raises after 25 mcg. for about a month and by now you probably need at least 100 mcgs. of Levo. This is disgraceful of your doctor. He is only looking at your TSH and is satisfied but this does not mean you have enough thyroid in your system. The Free T4 is more revealing and with those ranges your T4 should be much higher, over 1.50. Even when that is in range it has to become FT3 for it to do ANY good. This is real deception on doctor's part saying your TSH is good and then never finding out if you are converting into a decent FT3 level.

You need to find a way to increase your Levo and don't wait until Oct.

Related Tags

Friend49
Friend49
in reply to Heloise

I have to change doctors other ones leavin so august il see another doctor hopefully he'll listen to me and up it til i see an endocrinologist in october i tried to get her to up it 2 weeks ago and she said its in range no i can take 2 of 25s another question is synthroid better than generic i dont understand T3 is there a test for it she said it would show up in my other results it i needed it they say theres fillers in the 25 levos i know i cant wait til october but it was hard to get in

Friend49
Friend49
in reply to Friend49

Another question how do you know its converting toT3

Heloise
Heloise
in reply to Friend49

You are BARELY in range for your FT4 and have room for it to go UP. With all your symptoms you need to increase or find something else. Many people are on genetics or other brands.

Yes, the FT3 test should be done along with your FT4 at the same time. It's important to see the comparison to each other. I will venture a guess that your FT3 is NOT good.

Are you in the UK?

Friend49
Friend49
in reply to Heloise

No Us

Heloise
Heloise
in reply to Friend49

I'm also in the US and thought my doctor was bad. If you are on Medicaid I can understand why you are treated poorly.

Friend49
Friend49
in reply to Heloise

No im not just medicare and supplement they just dont listen to you i have had blood tests before last year and never knew i was hypo i have a nodule on my thyroid for 10 years had that checked again year and a half ago and it was alrite they said it was at least

Heloise
Heloise
in reply to Friend49

The problem is that if your TSH is the range somewhere they don't feel it's necessary to test anything else. the problem is that once you start on levo or NDT, that alone can make your TSH go down. This does NOT mean you have enough in your bloodstream. Now we see you don't have enough T4 to work with and at the very least he should recognize that fact. Personally I've always paid for my own thyroid tablets. They are relatively inexpensive. Naturethroid was about $28 for 100 (two grains). I guess Armour has gone up in price. They both work better than Synthroid. Generics are levothroid or similar and they are even cheaper.

Do you think you can get a refill if you use your levo up before your 3 months? Is that the way they still do it? I used to by Erfa from Canada and you can still purchase from Universal Drugstore in Canada. Have them fax the prescription.

Can you change your doctor, they aren't all bad although good ones are hard to find.

greygoose
greygoose
in reply to Friend49

There are fillers in all tablets. You cannot make a tablet without fillers.

Your doctor is abyssmally ignorant if she thinks the FT3 result will show up in other tests! It will only show up on the FT3 test.

T3 is the active hormone needed by every single cell in your body. Levo is T4, which is the storage hormone. Not everybody can convert it very well. But, your problem at the moment is that you don't have enough to convert!

Did you see the comment I left on your other thread, this morning?

Don’t be in a rush increasing Levo until you have made sure that your vitamin d is ideally 100 and your b12 is around 800, how is your folate and ferritin?

How is your gut health? Have you taken antibiotics?

Friend49
Friend49
in reply to Chippysue

I dont think she tested ferriton or folate. My gut health if you mean my stomach it always bothers me bloating and no appetite constipation. I havent been on antibiotics since last year.

shaws
shawsAdministrator
in reply to Friend49

Usually if hypo we have digestive problems. Many find taking a digestive enzyme with meals, especially protein, can help as it puts acid into our stomach. Because the symptoms of low or high acid are so similar doctors are apt to prescribe for high acid, when in fact we need acid to dissolve food and it is because we are hypo (slow) that our stomach acid is usually low too.

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2018/05/ho...

Heloise
Heloise
in reply to Chippysue

Chippy, no one is going to do well on 25 mcgs. no matter the cofactors. I see what you are saying but she won't be able to raise B12 or folate without more thyroid hormone.

Chippysue
Chippysue
in reply to Heloise

The members of my group who do not take thyroid replacement were able to increase their vitamins and minerals. It’s just an ideal opportunity to look at everything working properly and the thyroid may pick up, rather than the body getting used to thyroid replacement. I certainly wish I had known what I know now, I wouldn’t have pushed to have increased thyroid meds.

Heloise
Heloise
in reply to Chippysue

Were their TSH levels as high as almost 9.0? This seems a long term condition but yes, it's a good idea to try if she hasn't supplemented as they are probably low.

humanbean
humanbean
in reply to Chippysue

The optimal Vitamin D level depends on units of measurement used.

In the UK : 100 - 150 nmol/L

In the US : 40 - 60 ng/mL

Both the above optimal ranges are identical - it is just the units that are different.

Friend49 is in the US

Chippysue
Chippysue
in reply to humanbean

Yes I realised that after I posted.

It's a pity GPs like this can't be punished in some way, this is incompetence.

I’ve read on other posts on this forum, you will probably have read them as well, that 25mcg of T4 is too small a dose even to start on as it can make matters worse. There’s a list of all the things that you should ask to be tested for.

Hi there I am on those tablets and have been for 26 years! Im on 250mg per day, I had so much hair and half of it has gone, its very distressing, just recently my legs have been aching like crazy, I think you need to up your dosage, that's very low. Go see your Doctor before he calls you and ask for another blood test, good luck Kim

Your legs aches are probably due to nutrient deficiencies. This is also why some have to take high doses of T4. Many find by correcting nutritional deficiencies they can use less thyroid hormone. For many who are newly diagnosed, sometimes nutritional correction is all that is needed for the thyroid to get what it needs to carry out all of its functions.

You might ask your doctor about trying T3 along with T4 and see if that works better for you while s/he investigates possible nutritional deficiencies. I found that vitamin D is very common, along with low iron (which also can be the cause of major hair loss) and low magnesium both causing legs to constantly ache. All together, inadequate nutrient levels inhibit full thyroid function and conversions.

Please use Functional Medicine "optimal" levels for finding the perfect nutrient levels to ensure good health.

Hugs!

The 25 is just a low starter dose to get your body used to the medication. Sometimes when we start out the body can shut down its normal supple as it realises it is coming from elsewhere sobwith the amount your thyroid has been getting you could well be on an even lower dose now. You need to get a different doctor who knows how to treat you properly.

Chippy, your Endo is an idiot. No doubt about it -- having you on 25 mcg. T4 for over a year while you are still symptomatic is plain ridiculous. I'm in the U.S. but still had to find my way through the minefield of doctors-without-a-clue.

Here's why a doctor often doesn't "get it" and relies on TSH only:

#1. Your Doctor isn't Ordering a Full Thyroid Panel or he isn't Interpreting it Correctly

The "Complete" Thyroid Blood Panel​

#2. Blood levels of Thyroid Hormone are not necessarily what we care about

#3. Other hormones influence the action of Thyroid hormone

Cortisol and Adrenal Fatigue

Estrogen Dominance and Progesterone deficiency

#4. If you have Leptin Resistance or High Reverse T3 Levels TSH can't be Trusted

#5. (The practice of) "Reference Range Endocrinology"

#6. Failure to Diagnose and Appreciate Nutrients Required for Thyroid Function

#7. Not appreciating the effects that Endocrine Disrupting Chemicals have on Thyroid Function

restartmed.com/thyroid-lab-...

If you lack B12 it will be almost impossible for your thyroid to function properly. As that deficiency (and no doubt others) continues, the hypothyroidism worsens.

Please find a Doctor of Functional Medicine who specifically treats thyroid dysfunction. You have a right to to see one and it is covered by Medicare. Have them do nutrient testing as without certain nutrients, T4 will build up and become Reverse T3 and your symptoms will worsen. You may need to take T3 initially until you are able to convert T4, or you may be put on NDT which is a natural thyroid hormone containing both T4 and T3.

Also ask about using HCL with Pepsin or Betaine. This will give you the ability to break down proteins and allow you to absorb the nutrients from your food and supplements. The Doctor of Functional Medicine will understand what you need. You don't have to wait to do this part, you can buy HCL with Pepsin at any pharmacy. Just follow the directions on the bottle.

It is important to gain an understanding of how your body works and what is going on with it -- and most importantly, how to reverse it. It is possible you are simply nutrient starved and thus the thyroid is dysfunctional. The key will be to get your body back to a balance that is as normal as possible; as quickly as possible.

It is so horrible that doctors don't have a clue as to what to do about regulating the one organ in the body that regulates the rest of the body! You'd think it would be the first thing they learn. But it is not to be.

I'm so glad you are here at HealthUnlocked where there are so many who are knowledgeable and truly care to help others find their way to better health.

For your perusal. The articles below will help you gain a better understanding:

globalhealingcenter.com/nat...

thyroidpharmacist.com/artic...

draxe.com/hypothyroidism-di...

Healing Hugs to you!

Friend49
Friend49
in reply to CSmithLadd

Thank you im finally going to a endocrinologist but cant get in til october this drivin me nuts im on avorstatin for cholesterol should i wean myself off of them i read there bad for you im also going to a new family doctor august 6 i think the one i was goin to got fired??? Or something . I just dont have any faith in doctors anymore.

CSmithLadd
CSmithLadd
in reply to Friend49

High cholesterol is known to be caused by low thyroid function.

nahypothyroidism.org/high-c...

The key is to be sure adequate thyroid hormone is getting down to the cellular level (far too many medical doctors do minimum testing, which is inadequate). Demand to get the tests you wish and be armed with information as to why you need them.

Using TSH as a measure of thyroid hormone's success is reckless. Free T3, Free T4, Reverse T3 and thyroid antibodies testing should all be done. Then the SHBG test to be certain as to if adequate amounts of T3 are reaching the cellular level.

Cholesterol has been vilified by conventional medicine to a fault. The money is too good to pass up, so they prescribe statins whenever cholesterol rises rather than understanding what it is, why we need it and how the body cannot function without it. The body needs cholesterol for making hormones as well as for making Vitamin D and bile acids.

"The Harvard Special Health Report Managing Your Cholesterol explains cholesterol as a waxy, whitish-yellow fat and a crucial building block in cell membranes. It's also used to make vitamin D, hormones (including testosterone and estrogen), and fat-dissolving bile acids. In fact, cholesterol production is so important that your liver and intestines make about 80% of the cholesterol you need to stay healthy. Only about 20% comes from the foods you eat. "

health.harvard.edu/heart-he...

Hypothyroidism slows down all systems of the body. For the gallbladder, that means the sluggishness of cholesterol causes gallstones to form before it has time to leave the organ. Doctors still routinely remove the gallbladder instead of recognizing the need to rule out hypothyroidism as the cause before even thinking about gallbladder removal. It's tragic, truly.

We need cholesterol.

Statins have been proven to help others who have had a heart attack, but for the other 75% of people who take statins for prevention by attempting to lower their cholesterol, there really is little proof that they do much of anything. I believe that's because statins cannot reverse a sluggish thyroid! It is known that plaque buildup in the body can be caused by a thyroid that can't move cholesterol out of the body fast enough. Statins can't help with that because they're not thyroid hormones and they certainly aren't nutrients. Statins have plenty of side-effects. Unnecessary, for most. I was put on Statins and then did my own research and it was clear to me that getting hypothyroidism under control was the answer. My doctor only understood looking at TSH. So I tossed the statins in the garbage and wished I could have done the same to him. My health has recovered in ways I never thought possible -- until learning about the medications that were overkill by every sense of the imagination.

drhyman.com/blog/2013/10/09...

If only doctors would recognize that if a hypothyroid patient has high cholesterol and especially along with high blood pressure, those are both symptoms of a thyroid that isn't getting what it needs to function properly. Initially, hypothyroidism can be caused by iodine or another nutrient deficiency that is vital to thyroid production, function and its conversion into the active thyroid hormone that regulates the heart and all systems of the body. Restoring the cells with ample T3 thyroid hormone (converted from T4) should take care of the problem and any other issues caused by hypothyroidism (there are hundreds of symptoms when the body doesn't get ample doses of its regulator: thyroid hormone).

Read over the articles I've included here and gain a better understanding of what might work well for you. We're all not alike, and we shouldn't be treated as if we are. But some things are very evident. The doctor who accepts payments to write prescriptions is probably at the top of the list of the worst thing to ever happen to patients in dire need of answers to their health problems.

I highly recommend you find an alternative doctor. Someone who works with healing the body by finding the root cause and working to restore your health in that manner. I don't believe in using pharmaceuticals to cover up symptoms instead of addressing the reason why the symptoms are occurring. That is exactly what statins do in this case.

I truly hope this helps you. Find an integrative or functional physician who isn't afraid to treat you properly. When you call to make an appointment, ask if the doctor is familiar with treating difficult thyroid patients and restoring nutritional health.

Hugs to you!

I disagree with significantly increasing your dose. Without knowing you, your symptoms and history. I think Heloise suggesting a 400 percent increase is irresponsible.

I believe in making small, calculated changes and charting the results on your symptoms and well-being. You sound like a remarkably strong and patient person.

Are you taking the generic GG/331 tablets?

If so, Can you split the 25 and add a half each day and be patient enough to track your changes for 8 weeks... that would mean adding 12.5 micrograms (50 percent increase).

At the end of that time, re-evaluate based on how YOU and YOUR SYMPTOMS have changed.

Our thyroid hormones are among the most powerful substances in our bodies. Radical changes to your individual T4 dose, which you have tolerated for a year would be a shock to your system.

LT4 has a 7 to 9 day half-life for most people living with hypothyroid. That is one reason to not make significant or successive changes to your exogenous dosage. Most or bodies do not register, react and stabilize to the new exogenous dose for several weeks. and the effect of that dose on some symptoms can take even longer as the body's metabolic systems adjust to that new dose of thyroid hormones.

As you are from the states and have greater access to treatment variations I recently read this pdf out of Arizona and found it enlightening regarding dose and management of Hashimoto's.

drchristianson.com/wp-conte...

I wish you the best and please recognize that my suggestions come from my own experience and study. It differs from many here, so often we make recommendations that inadvertently miss the boat because we do not have the complete picture of any poster's unique situation.

You may also like...